tag:blogger.com,1999:blog-48435269880830080452024-03-05T16:18:30.622-08:00Hope for Emma's HeartSarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.comBlogger306125tag:blogger.com,1999:blog-4843526988083008045.post-36988634774309279432018-07-19T20:37:00.000-07:002018-07-19T20:37:41.147-07:00One Year
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">One year. One year
without hearing her belly laugh. One year without watching her dance to
Pentatonix and Home Free. One year without our favorite nurses and therapists
in our home. One year without weekly trips to see Dr. Lemler and the cardiology
clinic crew. One year of not filling med syringes. One year of not fighting
insurance companies for what she needed. One year of not hearing the incessant
beeping of multiple medical machines. One year of not listening to her FaceTime
conversations with Grampa. One year of not hearing her beg to take Max to Sonic.<span style="margin: 0px;"> </span>One year without silly hand. One year of not
singing “Your Special” song every night. One year of not watching her go super fast
with daddy on her power wheels. One year of Emma not telling me that she loved
me. One year without Emma and Oh what a year it’s been. </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">The year has gone by
surprisingly fast.<span style="margin: 0px;"> </span>Some days it seems
like years since I have heard her laugh. <span style="margin: 0px;"> </span>Scott and I get asked a lot how we are doing?
Most of the time you will hear us say that we are doing fine. And truthfully,
that’s the case most days. We find ourselves settling into the monotony of
life.<span style="margin: 0px;"> </span>Over the course of the year, we have
learned some things about grief, learned some things about ourselves, and learned
even more how to cling to our hope.<span style="margin: 0px;"> </span>Here
are some things we have learned:</span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">Lesson 1: People
continue to live their lives. The sun rises and the sun sets. People continue
to get up and go to their jobs or take care of their children. As they should. While
Scott and I were left to grapple with what our lives would look like, what our
new normal would be. To be honest, that was harder for me than I thought. Scott
went back to work and I was left at home. I was left in the quiet. That
deafening quiet that you long for as a parent, but I can promise you that you
hate when it becomes your daily reality. For a while I was busy with getting our
new house settled, but when the dust settled from all of that, I struggled with
finding my place. I tried subbing at some local schools but didn’t really
connect like I hoped. You see, when your life is consumed with caring for an
individual, in the ways that I cared for Emma for years, it was like having an
essential part of my body removed when she passed away.<span style="margin: 0px;"> </span>There have been days that it hurts to breathe…..that
physically getting out of bed is a struggle.<span style="margin: 0px;">
</span>There have been many days that I (and Scott) have put smiles on our
faces and attended various events in the midst of our grief. <span style="margin: 0px;"> </span>However, through it all, I’m slowly finding
where I belong, so to speak, and Scott is settling back in to his norm and
well, the world is slowly starting to turn again.</span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">Lesson 2: Scott and I
were reminded about the importance of marriage. Let me delve into that. Growing up
my parents always made it apparent to my brother and I that after their
relationship with God, the second most important relationship they had was theirs.
This is how God designed marriage and when it works this way, it is a beautiful
thing. In all transparency and honesty, Scott and I struggled with this while
taking care of Emma. Emma’s life and all of her medical problems created a
situation in which her care had to become a top priority. While neither one of
us ever regret the ways in which we cared for, there were times in which we did
not take care of our marriage. I am thankful for my parents who forced us at
times to step out of the hospital or take a vacation to create an environment
where were able to reconnect and focus on each other. All of this became even
more important after we lost Emma.<span style="margin: 0px;"> </span>You
see, there is no one on this earth. I repeat no one who can begin to understand
how I feel. The person who can come close is Scott. Through the loss of our
child, we had to rely on one another, open up to one another, cry with one
another, and laugh and reminisce. I can say that I am truly blessed to have
Scott in my life for many reasons and I can’t even begin to imagine what my
life would be like without his support. I would encourage all of my married
friends and family to make your marriage a priority. Find time to cultivate
your marriage, to strengthen your marriage, and to put your marriage in the
place that it should be. I hope that you never have to experience the hardships
and pain that Scott and I (and way too many other families) have had to face
but I promise that if you do, having that partner makes a world of difference.</span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">Lesson 3: Grief looks
different for everyone.<span style="margin: 0px;"> </span>Some people need
to cry.<span style="margin: 0px;"> </span>Some people need to become
reclusive.<span style="margin: 0px;"> </span>Some people need to make
frequent visits to the cemetery.<span style="margin: 0px;"> </span>Some
people bottle everything up inside.<span style="margin: 0px;"> </span>Some
people want to constantly talk about their loved one.<span style="margin: 0px;"> </span>Some people are a combination of these…..and
guess what?<span style="margin: 0px;"> </span>It is all ok!<span style="margin: 0px;"> </span>We all have the right to grieve how we feel
is best. <span style="margin: 0px;"> </span>We have had people concerned
about the way Scott and I are grieving.<span style="margin: 0px;">
</span>Let me make something very clear, Scott and I have been grieving since
before Emma was born. For six years Scott and I loved our child and we cherished
the moments that we had with her but we also grieved her. And that may sound
odd to some of you out there but it is what worked for us. We grieved the
normal that we were not going to have. We grieved the fact that our child was
not going to learn how to ride a bicycle, we grieved the fact that we might
never hear her say our names. We grieved the fact that we wouldn’t get to take
her to see all of these wonderful places that we hoped we could get to. We
grieved the fact that she might never know what it was like to not experience
frequent doctors’ visits, pokes, and hospital stays and yes we grieved the fact
that we would probably never see her make it to her teenage years. You see, we
are fairly private people when it comes to our grief. But the odds of you seeing
Scott and I in tears over Emma is very small. That does not mean that we do not
grieve or shed tears.<span style="margin: 0px;"> </span>You do not see the
solo car trips in which tears flow as some of “our songs play on the radio.”<span style="margin: 0px;"> </span>You do not see the random days when a picture
or a memory triggers a good cathartic cry.<span style="margin: 0px;">
</span>Please don’t EVER judge the grief of bereaved parents.<span style="margin: 0px;"> </span>You may think you understand, but your “advice”
is not wanted or needed.<span style="margin: 0px;"> </span>I will tell you
what you CAN do.<span style="margin: 0px;"> </span>You can offer support,
a random card or text, telling them a favorite memory of the person, or
literally just listening.</span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">Lesson 4: God and HIS
promises are enough. I can’t tell you how many times well-meaning and extremely
kind people tell us that we are inspiring and strong. These words are uplifting
and so very humbling and yet at our core Scott and I are not enough. We are not
strong, we are not perfect, we are not inspiring but I can tell you with every
fiber of my being who is.<span style="margin: 0px;"> </span>We serve a God
who has carried us through our darkest moments. We serve a God who has been
faithful when we are weak, who stays stays strong when I faulter and who has
never left our side in this journey. We find our joy in HIM and HIS promises
and we know without a shadow of a doubt that our sweet girl is finally whole
because of him. That doesn’t mean that we haven’t been sad or angry or hurt,
but it means that through it all we have a hope and that hope has carried us
through. For Scott and I we relied heavily on our faith. We coveted prayers
from people and we were comforted in the fact that we serve a God who has our
best interest at heart even though that might look different than what we thought
.That’s what worked for us that’s what helped us as we faced new daily
challenges, embraced the hardships, and worked on focusing primarily on the
blessings. And it’s OK to get angry. It’s OK to feel overwhelmed and lost and
sad. That is so normal feel those things, so cry, scream, hit a punching bag,
or whatever but don’t let it overcome you. </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">Lesson 5: It is so
important for us to remain active in the CHD community.<span style="margin: 0px;"> </span>When Emma was diagnosed with a CHD, we joined
a club that no one wants to join; however, that community became extremely
important in our lives.<span style="margin: 0px;"> </span>The doctors,
nurses, therapists, social workers, child life specialists, other hospital staff,
and CHD families have become family to us over the last seven years.<span style="margin: 0px;"> </span>It is important to Scott and I that we stay
active at the hospital and in the greater CHD community.<span style="margin: 0px;"> </span>We have opinions and advocacy to share, and support
and encouragement to give.<span style="margin: 0px;"> </span></span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<i><span style="color: #686868; margin: 0px;"><span style="font-family: Calibri;">“The death of a child is so
painful, both emotionally and spiritually, that I <span style="margin: 0px;">truly wondered if my own heart and spirit would ever heal
… I soon learned that I could help myself best by helping others …” </span></span></span></i><span style="color: #26282a; font-size: 9pt; margin: 0px;"><span style="margin: 0px;"> </span>Barbara Bush</span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">Lastly, Scott and I want
to send a big thank you to all of our family and friends who have stood beside
us this past year.<span style="margin: 0px;"> </span>We are thankful for
the prayers, encouraging texts/messages, and support.<span style="margin: 0px;"> </span>We continue to press forward, remembering to
find JOY, share Emma’s story, and finding ways to give back.<span style="margin: 0px;"> </span>So, feel free to share your favorite Emma
memory below.<span style="margin: 0px;"> </span>Those memories will bring
us some much needed smiles and laughs. </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;">God
is good!<span style="margin: 0px;"> </span>All the Time!<span style="margin: 0px;"> </span>God is good!</span></span></div>
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/AkiO0IU8NDo/0.jpg" src="https://www.youtube.com/embed/AkiO0IU8NDo?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<div style="line-height: normal; margin: 0px;">
<span style="color: #26282a; margin: 0px;"><span style="font-family: Calibri;"><br /></span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<br /></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-16883590796147375132018-01-01T21:59:00.001-08:002018-01-01T21:59:17.443-08:00Reflection
<br />
<div style="line-height: normal; margin: 0px 0px 10.66px;">
<b><span style="font-family: "Times New Roman",serif; font-size: 13.5pt; margin: 0px;">Reflection.
</span></b></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">Reflection. The end of the year is
often the time when people reflect. They reflect on the past year… it’s
successes and it’s failures, it’s good times and it’s bad times and look ahead
to what the future holds. As I reflect on 2017, my mind and my heart struggle
to truly put into words what this last year has been like for our family. I am
reminded of the good times. The experiences that we were able to have with Emma
and the joy that so many of those experiences brought to our precious girl and
in turn to Scott and I. 2017 brought immense physical and mental growth for our
sweet girl. </span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">We watched her take independent
steps with her walker. Our hearts were filled with the upmost pride to see her
take her walker and walk in the Red Balloon Run and Ride. I think we might have
been the loudest people cheering that day. You see, her walking was no small
feat. It was what doctors said would be an unconquerable milestone that with
one strong-willed little girl, fabulous therapists, and persistence, she did
it. </span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">We witnessed our intelligent girl learn
how to navigate her speaking assistive device. It brought such joy to her to order
her own food at Sonic. Oh she was so proud of herself! <span style="margin: 0px;"> </span>We saw her conquer spelling, reading, basic
math, and witnessed her writing her name so beautifully.<span style="margin: 0px;"> </span>A token that I was able to turn into a
necklace that I wear almost daily. <span style="margin: 0px;"> </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">As I reflect back on the last year I
can’t help but think about some of our adventures. Emma got to go to Fossil Rim
to see the animals with her cousins, she got to make trips to Oklahoma to see
family. She rode a four wheeler and paddle boat.<span style="margin: 0px;"> </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">But during this time of reflection,
it’s not the big things, it’s the little things that flood my mind the most.
The trips to Sonic every Friday after the weekly doctor appointments to get
french fries, the endless readings of <u>Pout Pout Fish</u> and <u>Frog on a Log,</u>
the dance parties to Pentatonix and Home Free and Hamilton, the interactions
with her Grampa, her weekly homeschool, therapist and Nurse interactions, the
nightly power wheels rides with her daddy, the open and shut the door game, silly
hand, the Its Baby Big Mouth on YouTube, the kisses and the singing your
special song every night with prayers as we tucked her in bed. Those are the
reflections that fill my heart. </span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">But I would be lying if I didn’t say
that reflecting on this past year also included some very hard times. I don’t
wish upon anyone in this world to have to experience what Scott and I had to experience,
and yet I hear of families almost daily who lost a child to CHD.<span style="margin: 0px;"> </span>There is absolutely no easy way to make the
decisions that Scott and I had to make. Nothing that will bring you to your
knees quicker than watching your child take their last breath. We could let
those thoughts consume us and to be honest sometimes they do. Our hearts ache
for her. Don’t get me wrong, it brings us the upmost comfort and peace to know
where she is. To know that our precious girl who fought so hard in this life
and overcame so many obstacles all while dealing with daily pain and struggles
is no longer dealing with those same struggles; however, that doesn’t take away
our pain. It makes our pain bearable.<span style="margin: 0px;"> </span>It
doesn’t take away the tears.<span style="margin: 0px;"> </span>The truth
is this….Scott and I choose to find JOY, amidst the pain and the loneliness.<span style="margin: 0px;"> </span>The odds are when you see and when you talk
to us about Emma, you won’t see tears, you will see a smile.<span style="margin: 0px;"> </span>That doesn’t mean we aren’t grieving.<span style="margin: 0px;"> </span>That doesn’t mean we don’t miss her terribly.<span style="margin: 0px;"> </span><span style="margin: 0px;"> </span>God
gives us the strength to get out of bed each morning and face a new day. His
unwavering love and comfort allows us to find joy even in the dark times. But
it doesn’t take away the emptiness that our hearts feel and the hole that was
left when she left. There are days where Scott and I are will hear a song or
see a picture or find something of hers that automatically causes tears to fall
from our eyes. There are days when I don’t really want to be around a lot of
people, where it seems like everyone else’s world is continuing to turn and
mine stopped. We don’t expect people to understand who haven’t gone through it.
But know that sometimes Scott and I are smiling through incredible grief. We
are attending events and going on with life even when we would rather be home
just the two of us. Know that it’s not getting easier, and that forever we will
miss her.</span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">So as you reflect on this last year,
do your best to find more joy than struggle. And, as you look forward to 2018 I
would encourage you to find more opportunities for joy. When your kids are
being total brats ;) remember how blessed you are to have them and hug them a
little tighter. Find time to give back to others, spend more time laughing, and
remember why we have the ability to get up each day. Scott and I are 100%
convinced that we are able to face each new day because we have a God who has a
plan that is bigger than the heartache that we are feeling right now. And if
you see Scott and I, don’t be afraid to talk to us about Emma. You see we had
the honor to be her mom and dad for 6 1/2 years. The memories we made with her
and the relationships formed because of her will forever be a part of us.<span style="margin: 0px;"> </span>We love hearing your Emma memories and we
love getting to hear about the impact she made.</span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">As you reflect on 2017 and move into
2018, remember God is good. All the time. God is good. If you are having
problems believing how we can feel that way, feel free to talk to Scott and I.<span style="margin: 0px;"> </span>We would love to tell you why we believe that
with every fiber of our being. </span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;">We leave you with this last question:
Are you finding JOY in the Journey?<span style="margin: 0px;"> </span></span></div>
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="margin: 0px;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/AkiO0IU8NDo/0.jpg" src="https://www.youtube.com/embed/AkiO0IU8NDo?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<div style="line-height: normal; margin: 0px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="margin: 0px;"><br /></span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-23257128657776504202017-06-17T07:02:00.001-07:002017-06-17T07:18:29.671-07:00Quick Recap<div><p class="p1" style="margin: 0px; line-height: normal;"><span class="s1" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I know...I know....I've been a huge slacker on the blog. I would try to come up with some sort of witty excuse, but let's be real, life has just been busy. So, let's do a quick recap of the last few months. </span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">January and February were relatively quiet months for our family. The biggest thing we dealt with was reoccurring pink eye. We enjoyed time at home doing the regular day-to-day activities. We had our family pictures taken as well.</span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrTZSyLeHlEjags1buGRuqhMKxbGm2nPXZZuvMO8aBrxN1DEbxaU-35HO8Rbh-EnZHoEPat1hR8shMUxBdSkBAPc6dSgTw8jIoyI2WZIAwcaLx9vaiLlOCnbaTVrWiki-ZX-ENnZ9ffLsS/s640/blogger-image--1826332520.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrTZSyLeHlEjags1buGRuqhMKxbGm2nPXZZuvMO8aBrxN1DEbxaU-35HO8Rbh-EnZHoEPat1hR8shMUxBdSkBAPc6dSgTw8jIoyI2WZIAwcaLx9vaiLlOCnbaTVrWiki-ZX-ENnZ9ffLsS/s640/blogger-image--1826332520.jpg"></a></div><br><p></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv6WlTvJZ3Jp5JwgmgRZb5gGymoVz3dU4OIvZxa0hgbHEphSpyE4wO3usy0jJu1OifDpwol8nl1oeXsf5d3d_GjwRG-br7YPXBKNPG1Gh-mJ4GMBKHULiVcS3PnKV9wOaU89XBF2RwkxZR/s640/blogger-image-65218943.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv6WlTvJZ3Jp5JwgmgRZb5gGymoVz3dU4OIvZxa0hgbHEphSpyE4wO3usy0jJu1OifDpwol8nl1oeXsf5d3d_GjwRG-br7YPXBKNPG1Gh-mJ4GMBKHULiVcS3PnKV9wOaU89XBF2RwkxZR/s640/blogger-image-65218943.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmfDFtEw3j7B8bb6vILeAtXScVXmIQ6wbVYPkUGw5edQBRGUNrmI8yNI0dW07jtffu2F7vxmHoWXdBVMInF8AY3pv9HlBb5XUeRQZnAevq8wNirxkfAmj0153mZPXgjMWoJf6Va3Mi96au/s640/blogger-image--1878803348.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmfDFtEw3j7B8bb6vILeAtXScVXmIQ6wbVYPkUGw5edQBRGUNrmI8yNI0dW07jtffu2F7vxmHoWXdBVMInF8AY3pv9HlBb5XUeRQZnAevq8wNirxkfAmj0153mZPXgjMWoJf6Va3Mi96au/s640/blogger-image--1878803348.jpg"></a></div><br></div><br></div><br><p></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">March brought about a fun field trip for Miss Emma. When her cousins were on spring break, Gramma took all of us to Fossil Rim to see the animals. We got there bright and early in the morning when all of the animals were hungry. We all enjoyed the little trip and Emma really liked seeing the animals up close.</span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFfCQNupCDXSeqeuhNSJrQzxFSLA9jPuxwzoM9DuCnRSc4A6dLgIBMiIdHs4Ept_tSc0l7IOKj3vudftMLU1dxnneufkWWNkfQYi0JQSUg_-HBO0CKpcX5yyqVHhY286_znKr-I-O4c67f/s640/blogger-image--224407185.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFfCQNupCDXSeqeuhNSJrQzxFSLA9jPuxwzoM9DuCnRSc4A6dLgIBMiIdHs4Ept_tSc0l7IOKj3vudftMLU1dxnneufkWWNkfQYi0JQSUg_-HBO0CKpcX5yyqVHhY286_znKr-I-O4c67f/s640/blogger-image--224407185.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDnZcU9Xm8hz-au86KAQE9dkPF6hyphenhyphenOSzpFmIQVQYSMkmGxaWKWfkL5Au4y0SfrjX9cN4WzFyIR8toAWJdYp6WsnxAy9kTCrM_iZcYfdkWOV9komHlFb7o6jbidixpDPHyVWD78tNfRHxma/s640/blogger-image-363462712.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDnZcU9Xm8hz-au86KAQE9dkPF6hyphenhyphenOSzpFmIQVQYSMkmGxaWKWfkL5Au4y0SfrjX9cN4WzFyIR8toAWJdYp6WsnxAy9kTCrM_iZcYfdkWOV9komHlFb7o6jbidixpDPHyVWD78tNfRHxma/s640/blogger-image-363462712.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzouDViBfTtYxulSllMzSKZuy7oIGOKWRPFF6qpOi6Q1pO6aW_Ro-cEjnaoFwz35aU-FK_DyJsb0akLEdOFZZHRq_5hhHZ4lgE4HoG1K2QXkUagjixYT2RT4kpNv_tZ1lJ1kKFwZ0B3yod/s640/blogger-image-394836701.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzouDViBfTtYxulSllMzSKZuy7oIGOKWRPFF6qpOi6Q1pO6aW_Ro-cEjnaoFwz35aU-FK_DyJsb0akLEdOFZZHRq_5hhHZ4lgE4HoG1K2QXkUagjixYT2RT4kpNv_tZ1lJ1kKFwZ0B3yod/s640/blogger-image-394836701.jpg"></a></div><br></div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja-QMzQd-bAyOMN_hv0YRulX-2tTY6x7uEJ_3RedYU3krbQd9gcdvFfuEcgQ9ofjaQExvhoYjrfz8xGY3erytiSrWpTY5E81MUR0IwSkM8muL52esFTvGEDy05Sf9gEHOJtTNMLXIPtowJ/s640/blogger-image--1783333737.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja-QMzQd-bAyOMN_hv0YRulX-2tTY6x7uEJ_3RedYU3krbQd9gcdvFfuEcgQ9ofjaQExvhoYjrfz8xGY3erytiSrWpTY5E81MUR0IwSkM8muL52esFTvGEDy05Sf9gEHOJtTNMLXIPtowJ/s640/blogger-image--1783333737.jpg"></a></div><br><p></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4Y5kiIZ_0rnHqVGkzHW2VwHEKd9FUoEFC8eGX6HmDXdm-orRe_j_mHv82L6qV1RpjmdHdmO55fLKT1H-p8EnqKipRXr4N-NUPbw-ar7F5numB4d2wSR9GnF4WnKLidL6b8URLSzW0EdvT/s640/blogger-image-744247662.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4Y5kiIZ_0rnHqVGkzHW2VwHEKd9FUoEFC8eGX6HmDXdm-orRe_j_mHv82L6qV1RpjmdHdmO55fLKT1H-p8EnqKipRXr4N-NUPbw-ar7F5numB4d2wSR9GnF4WnKLidL6b8URLSzW0EdvT/s640/blogger-image-744247662.jpg"></a></div><br><p></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">April was a more difficult month for Emma. She woke up one morning with a diaper full of blood. 😬. That landed us an automatic admission into hotel Children's. She was diagnosed with c-diff and was in the hospital through Easter. We made the most of our admission and even fit an egg hunt on Easter. April also was full of fun hospital events. The annual Heart Center picnic was at the first of April and CMC's Red Balloon Run and Ride was at the end of April. Emma met a big milestone and walked with her walker in the fun run. We were all so very proud of her.</span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">May was another interesting medical for month for Emma. We had several issues with her Picc line. Her Picc line that was a year and a half ind cracked, so we had to get it replaced. The replacement failed and we had to get it replaced again. Quite the roller coaster ride for a few weeks. Emma also had an issue with hypernatremia that landed us in the hospital for a weekend. We did get to do a few fun things including a trip to see Lion King the musical and family time in Ada</span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">June has started with a bang. Due to the regionalization of healthcare in Texas we are having to move into another county. We put our house for sale a couple of weeks ago. It is under contract and we are under contract on a house in Collin County. During the house showing process, we made lots of trips to Sonic while people are looking at our house. Emma loved getting to feed Max French fries. Needless to say, the next couple of months are going to be busy. We are excited about our next adventures. </span></p><p class="p3" style="margin: 9px 0px 8px; line-height: normal;"><span class="s1" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><p class="p3" style="margin: 9px 0px 8px; line-height: normal;"><span class="s1" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><p class="p3" style="margin: 9px 0px 8px; line-height: normal;"><span class="s1" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></p><p class="p2" style="margin: 0px; line-height: normal; min-height: 20.3px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s1"></span><br></span></p><p class="p2" style="margin: 0px; line-height: normal; min-height: 20.3px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s1"></span><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span class="s1" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thank you for hanging in through this long overdue update. We continue to press forward with Emma's healthcare. We monitor her heart failure and make regular adjustments to several medications. She is a trooper through it all and keeps us on our toes. </span></p><p class="p2" style="margin: 0px; line-height: normal; min-height: 20.3px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s1"></span><br></span></p><p class="p1" style="margin: 0px; line-height: normal;"><span class="s1" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">God is good! All the time! God is good! L </span></p><p class="p2" style="margin: 0px; line-height: normal; min-height: 20.3px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s1"></span><br></span></p><p class="p2" style="margin: 0px; line-height: normal; min-height: 20.3px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s1"></span><br></span></p></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br><br></span></div><div id="AppleMailSignature"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br>Sent from my iPhone</span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Sent from my iPhone</span>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-59739440219117935102017-01-17T19:34:00.001-08:002017-01-17T19:50:01.936-08:00New Year<div id="yui_3_16_0_ym19_1_1484709774748_3820"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div id="yui_3_16_0_ym19_1_1484709774748_3848"><div id="yui_3_16_0_ym19_1_1484709774748_4201" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4202">Well, once again, it has been awhile since I have updated the blog.</font><span id="yui_3_16_0_ym19_1_1484709774748_4203" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4204"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4205">I could blame a busy couple of months, the holiday season, or maybe just maybe I forgot…I’ll let you guess.</font><span id="yui_3_16_0_ym19_1_1484709774748_4206" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4207"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4208">The last couple of months have been filled with many wonderful memories/moments and a month long hospital stay.</font><span id="yui_3_16_0_ym19_1_1484709774748_4209" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4210"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4211">The later was quite an event.</font><span id="yui_3_16_0_ym19_1_1484709774748_4212" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4213"> </font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4214" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4215">Emma entered the hospital at the end of November with a UTI that caused her to run a very high fever.</font><span id="yui_3_16_0_ym19_1_1484709774748_4216" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4217"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4218">This landed us in the hospital for IV antibiotics and observation for hydration issues.</font><span id="yui_3_16_0_ym19_1_1484709774748_4219" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4220"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4221">Unfortunately, she became very dehydrated due to her high fever, so we had to hold her diuretics which aid in keeping fluid off of her lungs and abdomen.</font><span id="yui_3_16_0_ym19_1_1484709774748_4222" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4223"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4224">She did not tolerate the diuretic hold well and needed extra respiratory support as well as a closer eye on her kidney numbers, so we were transferred to the Cardiac ICU.</font><span id="yui_3_16_0_ym19_1_1484709774748_4225" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4226"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4227">She remained in the cardiac ICU for a few eventful weeks.</font><span id="yui_3_16_0_ym19_1_1484709774748_4228" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4229"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4230">We increased her heart failure meds to try to help her kidney function and increasing abdominal girth; however, her belly kept getting bigger and her kidney numbers were worsening significantly.</font><span id="yui_3_16_0_ym19_1_1484709774748_4231" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4232"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4233">Scott and I were beginning to get frustrated.</font><span id="yui_3_16_0_ym19_1_1484709774748_4234" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4235"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4236">No one had answers and Emma was getting worse by the day.</font><span id="yui_3_16_0_ym19_1_1484709774748_4237" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4238"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4239">Her belly got so big that she was having trouble breathing.</font><span id="yui_3_16_0_ym19_1_1484709774748_4240" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4241"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4242">We ran countless tests and kept hitting a wall.</font><span id="yui_3_16_0_ym19_1_1484709774748_4243" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4244"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4245">It always hurts my mom heart when Emma is hurting and no one can find answers.</font><span id="yui_3_16_0_ym19_1_1484709774748_4246" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4247"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4248">Scott and I truly felt we were dealing with fluid in her abdomen even though the tests were not showing it.</font><span id="yui_3_16_0_ym19_1_1484709774748_4249" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4250"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4251">Our suspicions were finally confirmed….almost 2 pounds later.</font><span id="yui_3_16_0_ym19_1_1484709774748_4252" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4253"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4254">We had a drain inserted into her abdomen and drained almost 2 liters of fluid.</font><span id="yui_3_16_0_ym19_1_1484709774748_4255" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4256"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4257">The fluid in her abdomen was fatty in nature, so we have switched her to a fat free formula.</font><span id="yui_3_16_0_ym19_1_1484709774748_4258" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4259"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4260">Draining the fluid in combination with the formula seemed to do the trick.</font><span id="yui_3_16_0_ym19_1_1484709774748_4261" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4262"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4263">So after four weeks we were discharged home. </font><span id="yui_3_16_0_ym19_1_1484709774748_4264" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4265"> </font></span><span id="yui_3_16_0_ym19_1_1484709774748_4266" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4267"> </font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4214" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFeJOJZANwq6PIwquYk68AahYMCf5PQ_Dk9Wbqj2HDAM52UYq2pBeppL2ht1wkYlrJvp1d0OmogE6cRpz8LQg9zOeOWrvPmk5Gc6BS59M3PaLZLRa2MxLXebDdg7Y_1kzc6lVI2dGDYKm2/s640/blogger-image--1113882819.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFeJOJZANwq6PIwquYk68AahYMCf5PQ_Dk9Wbqj2HDAM52UYq2pBeppL2ht1wkYlrJvp1d0OmogE6cRpz8LQg9zOeOWrvPmk5Gc6BS59M3PaLZLRa2MxLXebDdg7Y_1kzc6lVI2dGDYKm2/s640/blogger-image--1113882819.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4268" style="margin: 0px 0px 11px;"><font id="yui_3_16_0_ym19_1_1484709774748_4269" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSy-2LnuvUKQSOdlqC0_v78ErlfPtjLLOO-u-S2D8jlTx-jrzEnU0spUSNrYhwkqivmU3zGGb9-5pUchNfzyb60_751Dg5k8TRDHKwRY74WDrxifjBwzeUFV_-kT36sxYCIlTTqlzK7wWM/s640/blogger-image-863946110.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSy-2LnuvUKQSOdlqC0_v78ErlfPtjLLOO-u-S2D8jlTx-jrzEnU0spUSNrYhwkqivmU3zGGb9-5pUchNfzyb60_751Dg5k8TRDHKwRY74WDrxifjBwzeUFV_-kT36sxYCIlTTqlzK7wWM/s640/blogger-image-863946110.jpg"></a></div></font></div><div id="yui_3_16_0_ym19_1_1484709774748_4270" style="margin: 0px 0px 11px;"><font style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2P0P2nJwbNsh1_R4i6YALOc8VZoO6xGArCLwQbUZVinhwaGGP_Z70DGN9XxyPblC375T4U9rjqID5RWYttfm_2JURpUs3KIafI3XHU_v3K-hd0uxmcBQviSOPKy9zIJss_xh2nTI8DAuV/s640/blogger-image-1520711897.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2P0P2nJwbNsh1_R4i6YALOc8VZoO6xGArCLwQbUZVinhwaGGP_Z70DGN9XxyPblC375T4U9rjqID5RWYttfm_2JURpUs3KIafI3XHU_v3K-hd0uxmcBQviSOPKy9zIJss_xh2nTI8DAuV/s640/blogger-image-1520711897.jpg"></a></div><br></font></div><div id="yui_3_16_0_ym19_1_1484709774748_4270" style="margin: 0px 0px 11px;"><font style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></font></div><div id="yui_3_16_0_ym19_1_1484709774748_4270" style="margin: 0px 0px 11px;"><font id="yui_3_16_0_ym19_1_1484709774748_4271" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Now for the fun news….</font></div><div id="yui_3_16_0_ym19_1_1484709774748_4272" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4273">We were able to make it home in time for Christmas which was a wonderful surprise.</font><span id="yui_3_16_0_ym19_1_1484709774748_4274" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4275"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4276">We actually made it home the day before I graduated from UNT with my PhD.</font><span id="yui_3_16_0_ym19_1_1484709774748_4277" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4278"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4279">We got settled in and tried to regain some sort of normalcy after a month in the hospital.</font><span id="yui_3_16_0_ym19_1_1484709774748_4280" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4281"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4282">Emma came home on her increased heart failure medication and a new formula, but otherwise was on a pretty similar routine.</font></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4272" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span id="yui_3_16_0_ym19_1_1484709774748_4283" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4284"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPorer32AsMGnX4lstfORtIVZ0F9L0MFI7NkdnBCOOPbDklTs6ng7e7Go9te6ADUefYqVyxXDW7Cf_HPvPmfQR-mewgComNOJlY5BWe9_gbIw6jiT1-uCcCYE43LzhpRK3BS0uLCrDRsEO/s640/blogger-image-1279156016.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPorer32AsMGnX4lstfORtIVZ0F9L0MFI7NkdnBCOOPbDklTs6ng7e7Go9te6ADUefYqVyxXDW7Cf_HPvPmfQR-mewgComNOJlY5BWe9_gbIw6jiT1-uCcCYE43LzhpRK3BS0uLCrDRsEO/s640/blogger-image-1279156016.jpg"></a></div> </font></span><span id="yui_3_16_0_ym19_1_1484709774748_4285" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4286"> </font></span><span id="yui_3_16_0_ym19_1_1484709774748_4287" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4288"> </font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4290">We began our holiday celebrations by having “Friendsmas” with the Lawry family.</font><span id="yui_3_16_0_ym19_1_1484709774748_4291" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4292"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4293">This is a tradition we look forward to each year.</font><span id="yui_3_16_0_ym19_1_1484709774748_4294" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4295"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4296">Lots of laughs were shared, good food was consumed, and card games were played.</font><span id="yui_3_16_0_ym19_1_1484709774748_4297" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4298"> </font></span><span id="yui_3_16_0_ym19_1_1484709774748_4299" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4300"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4301">We were able to celebrate Christmas at home with just the three of us…oh and Max.</font><span id="yui_3_16_0_ym19_1_1484709774748_4302" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4303"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4304">We had a nice relaxing day together and Emma was very excited about her gift….a musical fan.</font><span id="yui_3_16_0_ym19_1_1484709774748_4305" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4306"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4307">Scott and I took turns attending worship <a href="x-apple-data-detectors://1" dir="ltr" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="1" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824);">Sunday morning</a> and opened gifts <a href="x-apple-data-detectors://2" dir="ltr" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="2" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824);">Sunday afternoon</a> with Emma.</font><span id="yui_3_16_0_ym19_1_1484709774748_4308" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4309"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4310">We took Emma to see Christmas lights that evening (not her favorite activity) and ended the evening singing and dancing to Emma’s new musical fan.</font><span id="yui_3_16_0_ym19_1_1484709774748_4311" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4312"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4313">We traveled to Oklahoma on Monday for Christmas with the Estes family.</font><span id="yui_3_16_0_ym19_1_1484709774748_4314" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4315"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4316">It was a quick but fun visit.</font><span id="yui_3_16_0_ym19_1_1484709774748_4317" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4318"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4319">Emma enjoyed the time with her aunt, uncles, cousins, and Gramma and Grampa.</font><span id="yui_3_16_0_ym19_1_1484709774748_4320" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4321"> </font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEPBUs0KaT4GxEc8SYf4FNFXvrcjyEYY4eU9W-zhB0ticxAM8lMHwJAiqRk0oaFSSaNMb2h_l-tjoBF2Lf9uvSlCyzDGBur9UIM5Voj2xOGJZbnyAIntF_Q9A0uQWVAsrNZY0G38kP9x9F/s640/blogger-image--262241089.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEPBUs0KaT4GxEc8SYf4FNFXvrcjyEYY4eU9W-zhB0ticxAM8lMHwJAiqRk0oaFSSaNMb2h_l-tjoBF2Lf9uvSlCyzDGBur9UIM5Voj2xOGJZbnyAIntF_Q9A0uQWVAsrNZY0G38kP9x9F/s640/blogger-image--262241089.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG_nUThKMHzJQ4pMHuXjuFQJMdNIUmCkIeo15YpfIQgMmKBIFS4sPAnpCw-NSyMFnUIPuTLPKMwMs-ljxlsa-bFEfb8cPGNbAObe_rrNEPhkJBDvngfcyYIYmhgT4ccC3b7KrGSMcRCtxd/s640/blogger-image--1529500136.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG_nUThKMHzJQ4pMHuXjuFQJMdNIUmCkIeo15YpfIQgMmKBIFS4sPAnpCw-NSyMFnUIPuTLPKMwMs-ljxlsa-bFEfb8cPGNbAObe_rrNEPhkJBDvngfcyYIYmhgT4ccC3b7KrGSMcRCtxd/s640/blogger-image--1529500136.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfrYvsr28sTUgtBHzyEcnT4heng5UgOVA42uekbPq7Mk4UFogqfm712PDHStngfc7ZClicy2u6cWG54-Bt62nBzqF5uxuVzFCcxs_aBA63zOVhMMZNE75FUHR0KD4Hti3wJ-C0C_rMYu7D/s640/blogger-image--953237259.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfrYvsr28sTUgtBHzyEcnT4heng5UgOVA42uekbPq7Mk4UFogqfm712PDHStngfc7ZClicy2u6cWG54-Bt62nBzqF5uxuVzFCcxs_aBA63zOVhMMZNE75FUHR0KD4Hti3wJ-C0C_rMYu7D/s640/blogger-image--953237259.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhanu6e1JvO33R0qIf3BlTv24vdpyTDbQo2BThkvzcZYpIXgyaTcSPFHK5CLwP0XKtVIXRKZRHJc8BNmXrVWEPxEAqMIA_nK-Ht4kp4H5xJQmcGsxTBdGiofteodfLY-GHbHRBceaxaM-Oj/s640/blogger-image--815210456.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhanu6e1JvO33R0qIf3BlTv24vdpyTDbQo2BThkvzcZYpIXgyaTcSPFHK5CLwP0XKtVIXRKZRHJc8BNmXrVWEPxEAqMIA_nK-Ht4kp4H5xJQmcGsxTBdGiofteodfLY-GHbHRBceaxaM-Oj/s640/blogger-image--815210456.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHM3V4RTo5IhfqmJOQPuz61pglMd3wi8DJV3Oqk9qt5Lp2_t57lot6SjmP-HOo2S6AhPjVFn5Mba-mqhrmsPpkwkPg4Rpxj738SEPCc47AGjp0BUdBwzdpQ2oHBYKTmIXEU6hKvcZsQsXC/s640/blogger-image--1816838897.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHM3V4RTo5IhfqmJOQPuz61pglMd3wi8DJV3Oqk9qt5Lp2_t57lot6SjmP-HOo2S6AhPjVFn5Mba-mqhrmsPpkwkPg4Rpxj738SEPCc47AGjp0BUdBwzdpQ2oHBYKTmIXEU6hKvcZsQsXC/s640/blogger-image--1816838897.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7lNrqODH3iwTm2egULD1nh7SXB8GmcuULJjx4QpUwMrs7NQUydAY-kRDNz2rB8SJ-rbX8A1_-V5n5Ces9x4yeDDDLsQp2981AkHliDv4SyTBXXIQ7grhdUdZSzUpH87_5sDONnqnr0koU/s640/blogger-image--2072244941.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7lNrqODH3iwTm2egULD1nh7SXB8GmcuULJjx4QpUwMrs7NQUydAY-kRDNz2rB8SJ-rbX8A1_-V5n5Ces9x4yeDDDLsQp2981AkHliDv4SyTBXXIQ7grhdUdZSzUpH87_5sDONnqnr0koU/s640/blogger-image--2072244941.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4289" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="margin: 0px;"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUC6bb1JhBoEKqVedIHmN4THfoJAS6GfEpa1xJB8_h8dxrjMD12F1BkNOyKpdO3O7mfZQmHcb2wMJ3RFlAR88E5ZYIfITGY2ZyW-kpJOACgaZDM36Ez6xv4mxl6x83Ga2hU3zN62Yg5qGc/s640/blogger-image--1975217697.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUC6bb1JhBoEKqVedIHmN4THfoJAS6GfEpa1xJB8_h8dxrjMD12F1BkNOyKpdO3O7mfZQmHcb2wMJ3RFlAR88E5ZYIfITGY2ZyW-kpJOACgaZDM36Ez6xv4mxl6x83Ga2hU3zN62Yg5qGc/s640/blogger-image--1975217697.jpg"></a></div><br></font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4322" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4323">After all of the holiday excitement, we have tried to get back into some sort of schedule.</font><span id="yui_3_16_0_ym19_1_1484709774748_4324" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4325"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4326">Emma has started back all of her therapies and school.</font><span id="yui_3_16_0_ym19_1_1484709774748_4327" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4328"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4329">We go to the cardiologist once a week for PICC line care and labs.</font><span id="yui_3_16_0_ym19_1_1484709774748_4330" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4331"> </font></span></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4332" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4333">We are enjoying having a happy girl back in the house.</font><span id="yui_3_16_0_ym19_1_1484709774748_4334" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4335"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4336">She is back to working hard in her therapies and learning more every day.</font><span id="yui_3_16_0_ym19_1_1484709774748_4337" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4338"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4339">She got a new sanding frame and SMOs to help her strengthen her legs and have more ability crawl around and attempt to stand.</font><span id="yui_3_16_0_ym19_1_1484709774748_4340" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4341"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4342">One of her new goals is to communicate more effectively with her communication device, so we are using that daily to get her to tell us her needs and wants. </font><span id="yui_3_16_0_ym19_1_1484709774748_4343" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4344"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4345">Most of the requests include: I want IPAD, I want French fries, and I want music.</font></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4332" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXRr6rJMkCX6v4UNbAQopMwiYk-jfe1JFIbjQB7Vrj2o7pj7_psMj4P-5Env2F8XUhE-RhDiafdr1lsqy8jAgbzxwQvH3Ze9dfyF77DDGdzfaZa6WboBwZXg6r5DmP3FBtItwqqrbrsT5W/s640/blogger-image--1086448992.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXRr6rJMkCX6v4UNbAQopMwiYk-jfe1JFIbjQB7Vrj2o7pj7_psMj4P-5Env2F8XUhE-RhDiafdr1lsqy8jAgbzxwQvH3Ze9dfyF77DDGdzfaZa6WboBwZXg6r5DmP3FBtItwqqrbrsT5W/s640/blogger-image--1086448992.jpg"></a></div><br></font></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4346" style="margin: 0px 0px 11px;"><font id="yui_3_16_0_ym19_1_1484709774748_4347" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjegvokmEixbHYX4FSP0uU2a0Wy3nL2NCf0xKmxZ2g42JybATkVamkjGDfMV8TYYrSpeqfNek1ovm-ECZW40nWaylNzFqin6hVwM83xgaSQJUnxTb8yWqF7BPh77SlDUudl02MbAjs78jUR/s640/blogger-image-1632060964.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjegvokmEixbHYX4FSP0uU2a0Wy3nL2NCf0xKmxZ2g42JybATkVamkjGDfMV8TYYrSpeqfNek1ovm-ECZW40nWaylNzFqin6hVwM83xgaSQJUnxTb8yWqF7BPh77SlDUudl02MbAjs78jUR/s640/blogger-image-1632060964.jpg"></a></div> </font></div><div id="yui_3_16_0_ym19_1_1484709774748_4346" style="margin: 0px 0px 11px;"><font style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwEKCUugj6v-jd6BbrLAM-VTqWl7bkCFjywHCBhrswnxLuU2mkrDZwOX8cjcRQ2pwRyX-CLmdazXXNcnPYuJLAHtcd8hUeSYDAuogBQmjk6eqsbUrAxN9eAAs6b0buvyt7Wix4gHt5rmcE/s640/blogger-image-265101201.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwEKCUugj6v-jd6BbrLAM-VTqWl7bkCFjywHCBhrswnxLuU2mkrDZwOX8cjcRQ2pwRyX-CLmdazXXNcnPYuJLAHtcd8hUeSYDAuogBQmjk6eqsbUrAxN9eAAs6b0buvyt7Wix4gHt5rmcE/s640/blogger-image-265101201.jpg"></a></div><br></font></div><div id="yui_3_16_0_ym19_1_1484709774748_4346" style="margin: 0px 0px 11px;"><font style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMC4rXsmo1LR5Rs4o4IgCVGu0otSLxNOWWVHboaCz5xcb14tjNtQyKQ5hnddbV28EW9gJnDAhfOIZPKmDOzrYiz7fgeG8bqzKG5WAN6MsJ_vLII8rdymN-WRg6ieybswvbOTAsPHf4UrL4/s640/blogger-image-533197546.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMC4rXsmo1LR5Rs4o4IgCVGu0otSLxNOWWVHboaCz5xcb14tjNtQyKQ5hnddbV28EW9gJnDAhfOIZPKmDOzrYiz7fgeG8bqzKG5WAN6MsJ_vLII8rdymN-WRg6ieybswvbOTAsPHf4UrL4/s640/blogger-image-533197546.jpg"></a></div><br></font></div><div id="yui_3_16_0_ym19_1_1484709774748_4348" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4349">Thank you all again for the prayers, support, and encouragement.</font><span id="yui_3_16_0_ym19_1_1484709774748_4350" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4351"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4352">We have been greatly blessed by all of the people who send cards, food, take care of our dog, etc. to make sure we have little worries outside of caring for our daughter when she is hospitalized. </font><span id="yui_3_16_0_ym19_1_1484709774748_4353" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4354"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4355">We could never thank you enough.</font></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4356" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4357">Remember, February is right around the corner which means CHD Awareness Week activities. </font><span id="yui_3_16_0_ym19_1_1484709774748_4358" style="margin: 0px;"><span id="yui_3_16_0_ym19_1_1484709774748_4359" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4360">J</font></span></span><span id="yui_3_16_0_ym19_1_1484709774748_4361" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4362"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4363">Get ready to wear red.</font></span></div><div id="yui_3_16_0_ym19_1_1484709774748_4364" dir="ltr" style="margin: 0px 0px 11px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font id="yui_3_16_0_ym19_1_1484709774748_4365">God is good!</font><span id="yui_3_16_0_ym19_1_1484709774748_4366" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4367"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4368">All the Time!</font><span id="yui_3_16_0_ym19_1_1484709774748_4369" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4370"> </font></span><font id="yui_3_16_0_ym19_1_1484709774748_4371">God is good!</font><span id="yui_3_16_0_ym19_1_1484709774748_4372" style="margin: 0px;"><font id="yui_3_16_0_ym19_1_1484709774748_4373"> </font></span></span></div><div><span style="margin: 0px;"><font face="Calibri" size="3"><br></font></span></div></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-67693422856171520832016-10-21T19:49:00.002-07:002016-10-21T20:10:23.737-07:00But If Not (words from my heart and birthday pics)<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<span style="font-family: ".sfuitext";">But if not… I recently read a book called Fight Back with Joy. And in the book, the author describes times in your life when you are asking, praying or even begging God to work a certain way in your life and yet God chooses not to work that way. For example I pray that Emma's heart will heal, and no longer be in heart failure, but if not… how will I respond to that answer? This statement, and the answer to it has been weighing on my heart lately so I thought I would just take a few moments and write from my heart. </span></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px; min-height: 22px;">
<span style="font-family: ".sfuitext";"></span><br></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<span style="font-family: ".sfuitext";">Scott and I close all of our blog posts with the phrase: God is good. All the time. God is good. We truly believe that this statement (I mean our faithful God) has aided us in many valleys over the past six years. There have been countless moments that I have felt angry, lonely, depressed, sad, and unsure. Without the knowledge of Who our God is and how He walks beside us everyday, I have no idea how we would get thru this journey. Our journey has been filled with countless "but if nots" It would be easy to feel forgotten or neglected; however, we seen those "but if nots" turned into beautiful blessings (maybe not right away...but in time). “But I will hope continually and will praise you yet more and more.” Psalm 71:14</span></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px; min-height: 22px;">
<span style="font-family: ".sfuitext";"></span><br></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<span style="font-family: ".sfuitext";"> I was driving home from a meeting the other day and a song came on the radio that described so many emotions I have felt over the last six years. In the words of the song, by Hillary Scott, there is a reminder of Who is in control and Who is walking beside us:"Sometimes I got to stop and remember you are God and I am not, so thy will be done." There have been many instances over the last six years in which I have questioned God's plan. Why should Emma have to suffer so much? Why can't she get to experience more normalcy? Why must she endure heart failure with no options? Why must she have so many medical/ developmental difficulties? He tells us in Romans 12:12 to: “Rejoice in hope, be patient in tribulation, be constant in prayer.” I am to fully trust in his plan...let go of my worry...and rest in the truth that He is in control. This is easier said than done unfortunately. This last month has been filled with many unexpected set backs and disappointments. I have been living in a fairly constant state of exhaustion which allows for doubt and worry to creep in and consume my mind. Don't get me wrong, I have so much to be thankful for; however, I'm human and disappointment is a very real thing. We are working on hospital stay 2 in less than a month. Once, for a nasty respiratory virus and currently for abdominal edema and low diuretic response. The first hospital stay directly impacted Emma's birthday party and this stay successfully cancelled a much needed family vacation. </span></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<br></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<span style="font-family: ".sfuitext";">Let's go back to that "but if not.." statement. I pray that we can soon figure out these latest medical issues of Emma's and go home...but if not, I will continue to trust in God's plan and work to see the good he weaving into our journey. "</span><span class="text Phil-4-4" id="en-ESV-29430"><sup class="versenum">4 </sup>Rejoice in the Lord always; again I will say, rejoice.</span> <span class="text Phil-4-5" id="en-ESV-29431"><sup class="versenum">5 </sup>Let your reasonableness<sup class="footnote" data-fn="#fen-ESV-29431a" data-link="[<a href="#fen-ESV-29431a" title="See footnote a">a</a>]">[<a href="https://www.biblegateway.com/passage/?search=Philippians+4%3A4-7&version=ESV#fen-ESV-29431a" title="See footnote a">a</a>]</sup> be known to everyone. The Lord is at hand;</span> <span class="text Phil-4-6" id="en-ESV-29432"><sup class="versenum">6 </sup>do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.</span> <span class="text Phil-4-7" id="en-ESV-29433"><sup class="versenum">7 </sup>And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."</span><span style="font-family: ".sfuitext";">Philippians 4:4-7 Thank you to each and everyone of you who have encouraged us in this journey and prayed for us during the "but if nots". God is Good! All the Time! God is Good!</span></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<br></div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px;">
<span style="font-family: ".sfuitext";">Enjoy some fun pictures of Emma from her belated birthday party and current hospital stay. </span><br>
<br>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQye2-khlThDTgzSDg3-2vjAuLGpUc2vfAm03UfKmltNbW3DDEUJbfiEt-xCXmQt_3zlMI5Uhfs11pbrrioskxO5DE3QvMpyNOXuMR-MT83ytuxle8XS0sjqrbkUgzetEMdtXAKD7lJaG/s1600/IMG_6509.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTQye2-khlThDTgzSDg3-2vjAuLGpUc2vfAm03UfKmltNbW3DDEUJbfiEt-xCXmQt_3zlMI5Uhfs11pbrrioskxO5DE3QvMpyNOXuMR-MT83ytuxle8XS0sjqrbkUgzetEMdtXAKD7lJaG/s320/IMG_6509.JPG" width="320"></a></div>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNxi9eVQY5OhNN-msv3leVs875PzIEfV0U9umc1SkHP5bjXpnY40t_6419LcpN10rs-YOjtWxJ1IP10nPO-yAmzc3UVeJOjjEudIrBTz9sh3WlBvhZBgwa1EizX7g4n7Q4PVDdDGF8nxqt/s1600/IMG_6567.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNxi9eVQY5OhNN-msv3leVs875PzIEfV0U9umc1SkHP5bjXpnY40t_6419LcpN10rs-YOjtWxJ1IP10nPO-yAmzc3UVeJOjjEudIrBTz9sh3WlBvhZBgwa1EizX7g4n7Q4PVDdDGF8nxqt/s320/IMG_6567.JPG" width="320"></a></div>
<br>
<div class="separator" style="clear: both; text-align: center;">
<br></div>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8NKS7kisfMxYZ6rDmjRzz1o3PFd_SENItm4_QWFa55Y03KCKVmnEmJtLZCkih8v5R9KYC_Mx5lMy7Oy5CH61QzzT6C63y0h_8BzYhzG_qz9e2dONdq9gIScfSthyphenhyphennNo80eBmadp_3zbsm/s1600/IMG_6547.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8NKS7kisfMxYZ6rDmjRzz1o3PFd_SENItm4_QWFa55Y03KCKVmnEmJtLZCkih8v5R9KYC_Mx5lMy7Oy5CH61QzzT6C63y0h_8BzYhzG_qz9e2dONdq9gIScfSthyphenhyphennNo80eBmadp_3zbsm/s320/IMG_6547.JPG" width="213"></a></div>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwaaHKNfNf3A8shG-oBVExVCDQTT_GOCjrAyKNl4PekuonsPgT12qsEg1rZqGsnpr3Nktl0qxPvbHW8bhoaK9mt3ZCKZmHN5Hj__DujOaoyFtQjvdZN_cPU_yTM6stoYqjCgTM1b0VX7Fm/s1600/IMG_6597.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwaaHKNfNf3A8shG-oBVExVCDQTT_GOCjrAyKNl4PekuonsPgT12qsEg1rZqGsnpr3Nktl0qxPvbHW8bhoaK9mt3ZCKZmHN5Hj__DujOaoyFtQjvdZN_cPU_yTM6stoYqjCgTM1b0VX7Fm/s320/IMG_6597.JPG" width="320"></a></div>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibwcPCHW109eZIcM5TdA6G5jL9UEe-vBT-LSGwPJ8aVZ9-cYB3_evRruCtAtMci6jo4b5np933UwHMZeYkjIMvsi0dEMHfbePuDdDHDqQCMlSLZSZuIEXOGH7sIXoDt8W-Ne7WYQtzsyFr/s1600/IMG_6715.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibwcPCHW109eZIcM5TdA6G5jL9UEe-vBT-LSGwPJ8aVZ9-cYB3_evRruCtAtMci6jo4b5np933UwHMZeYkjIMvsi0dEMHfbePuDdDHDqQCMlSLZSZuIEXOGH7sIXoDt8W-Ne7WYQtzsyFr/s320/IMG_6715.JPG" width="320"></a></div>
<br>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR-4DtwcWTamp4Gmdn6DnQagWoec6THOfqB4tOTbYVN62hXhx79a_VF29UlWfAmiBHvv4XwhuIXkAA6aI3wy0Q0EGaQXXpTFY0lgsqINooVqRLf5u2tdP8V60_UZcD8tTr9cH52YLXhPti/s1600/IMG_6681.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR-4DtwcWTamp4Gmdn6DnQagWoec6THOfqB4tOTbYVN62hXhx79a_VF29UlWfAmiBHvv4XwhuIXkAA6aI3wy0Q0EGaQXXpTFY0lgsqINooVqRLf5u2tdP8V60_UZcD8tTr9cH52YLXhPti/s320/IMG_6681.JPG" width="213"></a></div>
</div>
<div style="font-family: ".sf ui text"; line-height: normal; margin: 0px; min-height: 22px;">
<span style="font-family: ".sfuitext";"></span><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9SZI_qJJdaPdKJ0uGXiBI1ix8uNFGVA3iJpaXpzR0Bp2NOGaQkjEXAdfkJ-sc9gHgAqfHsC2RBdLmn_cDqnb1YSOYyLMREhrB49KvXmwxD1zFNbF11VHNPenL4nIUOZB9eAu0MSo8kh-H/s640/blogger-image-500825687.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9SZI_qJJdaPdKJ0uGXiBI1ix8uNFGVA3iJpaXpzR0Bp2NOGaQkjEXAdfkJ-sc9gHgAqfHsC2RBdLmn_cDqnb1YSOYyLMREhrB49KvXmwxD1zFNbF11VHNPenL4nIUOZB9eAu0MSo8kh-H/s640/blogger-image-500825687.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu3lbJ5tlVcp8DG-rUrqSJtrv7ltry2u-C8AMD9-fuZef8dmO2lqNlhjtlu8RVX_s3OrXI7Vy__ndwkTBbP4z2U6XZGbtUlId4FZFLgF8LgQOEn9X3tMJMixX1AjfamKsQ6LA-BtZKJqXK/s640/blogger-image--2009516784.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu3lbJ5tlVcp8DG-rUrqSJtrv7ltry2u-C8AMD9-fuZef8dmO2lqNlhjtlu8RVX_s3OrXI7Vy__ndwkTBbP4z2U6XZGbtUlId4FZFLgF8LgQOEn9X3tMJMixX1AjfamKsQ6LA-BtZKJqXK/s640/blogger-image--2009516784.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhao3K2ZSDpi3I9VKDpo_Wlc5bEkKwZKMSb7kluhQOVOQ9qPbyaIbpw-KG2SoeT6eYnmyFirk4L65165cY_eao2ajQw2xNflWKFQAOthELv2ktuKjuhrjVefmF1iZCXQ6zLz88DXJxkXLrM/s640/blogger-image-1440061866.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhao3K2ZSDpi3I9VKDpo_Wlc5bEkKwZKMSb7kluhQOVOQ9qPbyaIbpw-KG2SoeT6eYnmyFirk4L65165cY_eao2ajQw2xNflWKFQAOthELv2ktuKjuhrjVefmF1iZCXQ6zLz88DXJxkXLrM/s640/blogger-image-1440061866.jpg"></a></div><br></div>
Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-48033789420644787242016-08-28T20:15:00.003-07:002016-08-28T20:21:59.000-07:00Getting Everyone Caught Up<div class="separator" style="clear: both;">
<span style="font-family: Verdana, sans-serif;">Wow! It has been a long time since I have updated the blog. I will apologize for being negligent; however, we have truly been enjoying life with Miss Emma and for that I will not apologize. :) There have been some events in her life since my last post that I will discuss and fill you in on the last few months in this blog post.</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">Emma had a couple of event in June and July that sent her to the hospital for a few days. While Scott and I attended a pharmacy conference in Arizona at the end of May into June, Emma contracted a respiratory illness. When we returned from that event Emma's respiratory virus that progressively worsened. The virus landed us in the cardiac ICU for several days and then on the cardiac floor for a few days with the need for increased respiratory support and meds. This trip turned out to be a blessing in disguise and I will explain that later.</span></div>
<div>
</div>
<div>
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvhJ9HHfDZZSUyGGNKShv-ERG3FEW4Pd6a2yc38_flIHAvpj3Cvav6O6eJYRlVf4BcnCiiHd5TAMGFvc-BJdS0HLfnxzKX24wxElQlPtyzMny12PRHSob5bGBLfajO0_3LzGloQEpbJR2r/s640/blogger-image-2064360882.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br></a></div>
<span style="font-family: Verdana, sans-serif;">Emma was <span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">also admitted to the intensive care unit in July for cardiac arrhythmia issues. Her heart was beating way too fast which is called atrial tachycardia. It would then go into heart block which would slow it down way too much. So we were in the hospital for a few days to administer a new medication to help her heart return to normal rhythm. </span></span><br>
<span style="font-family: Verdana, sans-serif;"><br></span>
<span style="font-family: Verdana, sans-serif;"><br></span>
<span style="font-family: Verdana, sans-serif;">So back to that blessing in disguise. When Emma was impatient with her respiratory virus, she was put on a steroid to help with her lungs. While she was on that steroid, we noticed that her abdominal ascites was lessened, she had more energy, and her meds worked better. After discharging from the hospital, we conferenced with her cardiologist, pediatrician, and gastroenterologist. Well, they all agreed that none of this makes perfect sense, but we all agreed that it was worth a shot to try a longer-term steroid regimen to see if it would be beneficial. Whether it is pure coincidence or her steroid actually working, since she has been on the new medication, her belly has stayed small, we've lowered her diuretics, she has way more energy, she is wanting to try more things in physical therapy, and her heart failure number has improved. While we are still very new in this experiment, we are excited with the potential possibilities.</span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<span style="font-family: Verdana, sans-serif;">So what is our family been up to. We have truly been living, staying busy, and enjoying Emma's newfound energy. We continue to see the cardiologist weekly to monitor her blood work and maintain her PICC line. She has continued to see her physical therapist, occupational therapist, and speech therapist over the summer and makes improvements weekly with each of them.</span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<span style="font-family: Verdana, sans-serif;">We took a family vacation to Lake Texoma for our annual family reunion. It was extremely hot but Emma enjoyed the parts of being in the air-conditioned building LOL. She enjoyed being with her family and Scott and I enjoyed getting to do some things we love like fishing, waterskiing, and tubing.</span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<span style="font-family: Verdana, sans-serif;">Scott and I took a little celebratory trip with some friends in July. We took a cruise to Key West and the Bahamas. It was a very relaxing time with great friends… We ate a lot of food, laughed a lot, soaked up some sun, rode horses, kayaked, and Segwayed.</span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<div style="color: rgba(0, 0, 0, 0.701961); font-family: uictfonttextstylebody;">
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<div style="font-family: uictfonttextstylebody;">
<span style="font-family: Verdana, sans-serif;">We are now back into the swing of things. Emma started school this week which will add to her normal routine of all of her therapy visits. She is actively getting on her hands and knees and trying to crawl, standing for short periods of time unassisted, spelling words, simple addition and subtraction, reading comprehension, and so much more. She is loving time with her friends, family, nurses, and of course her mommy and daddy.</span></div>
<div style="font-family: uictfonttextstylebody;">
<span style="font-family: Verdana, sans-serif;"><br></span></div>
<span style="font-family: Verdana, sans-serif;">I wish I could say that I have a lot more free time now that my dissertation is complete; however, I seem to find ways to fill that up. I will be teaching Wednesday night Bible class with my friend Whitney and I'm still working with Mended Little Hearts of Dallas. I am; however, enjoying being more involved in Emma's daily schedule. Scott is staying busy with work as well as volunteering in several areas at our congregation. </span><br>
<span style="font-family: Verdana, sans-serif;"><br></span>
<span style="font-family: Verdana, sans-serif;">Thank you again for being patient with us as we strive to live our normal and enjoy every moment with our sassy girl.</span><br>
<span style="font-family: Verdana, sans-serif;"><br></span>
<span style="font-family: Verdana, sans-serif;">God is Good! All the Time! God is Good!</span></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8NGarv7KEQD8bRpNNOOSF-VltD1FtvND7Zz5gWV_7vqdJAvFrW15I0rDg-c8cxFU_NOQZLrldSzK2F1jETVUsD1yWKaN0V5TJhGk7MgR4R5lDYn25Mtkfo2X7vPDNBXD41aZ7Yes4lZz2/s640/blogger-image--1222899650.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8NGarv7KEQD8bRpNNOOSF-VltD1FtvND7Zz5gWV_7vqdJAvFrW15I0rDg-c8cxFU_NOQZLrldSzK2F1jETVUsD1yWKaN0V5TJhGk7MgR4R5lDYn25Mtkfo2X7vPDNBXD41aZ7Yes4lZz2/s640/blogger-image--1222899650.jpg"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Memorial Day muddin'</td></tr>
</tbody></table>
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI9Db6McV6BtR2pbxAAjSmsrvhKNxRSTQFiXgn7FEy281USN6jjPZxr0MSGJRWNEbXZWwTSnxOKjrecipZv8Wafdr6QjL1am7wjdHYWn7BJcjdvC5aTykJiaZvpyH04hi-GPw6gM6b1gDg/s640/blogger-image-603664984.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI9Db6McV6BtR2pbxAAjSmsrvhKNxRSTQFiXgn7FEy281USN6jjPZxr0MSGJRWNEbXZWwTSnxOKjrecipZv8Wafdr6QjL1am7wjdHYWn7BJcjdvC5aTykJiaZvpyH04hi-GPw6gM6b1gDg/s640/blogger-image-603664984.jpg"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All smiles at her dr appt</td></tr>
</tbody></table>
</div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhToPY9gI-OxstYK2qrHNi9zmXUkZd9r5BPYwZVCRs00bOLsndAOcQl-NNxXXoOQUBBD1UmuhjeNA1LKZIFWoFAa1XpNcrx_zlSgzMGyogtdA8AzNWrlfuHycdh107HcZ_AkzNEVSvmwgWb/s640/blogger-image--997831639.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhToPY9gI-OxstYK2qrHNi9zmXUkZd9r5BPYwZVCRs00bOLsndAOcQl-NNxXXoOQUBBD1UmuhjeNA1LKZIFWoFAa1XpNcrx_zlSgzMGyogtdA8AzNWrlfuHycdh107HcZ_AkzNEVSvmwgWb/s640/blogger-image--997831639.jpg"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Respiratory illness=no fun</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirme0CwDlVez4aeOYCUdIFv02iXb2-oqy-NnjV89n_BdnAd46RULS4_r4TuNcdku5Ak7c4BbIHEJYm7tyGIvJtI3lFq_AK5XO7v9CV5FwtYQQR7TUiCHmt9biTzrh666KJqn3m2GvNa1nN/s640/blogger-image-410169404.jpg" imageanchor="1" style="clear: right; font-family: -webkit-standard; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirme0CwDlVez4aeOYCUdIFv02iXb2-oqy-NnjV89n_BdnAd46RULS4_r4TuNcdku5Ak7c4BbIHEJYm7tyGIvJtI3lFq_AK5XO7v9CV5FwtYQQR7TUiCHmt9biTzrh666KJqn3m2GvNa1nN/s640/blogger-image-410169404.jpg"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">4th of July with Nana Jana</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvhJ9HHfDZZSUyGGNKShv-ERG3FEW4Pd6a2yc38_flIHAvpj3Cvav6O6eJYRlVf4BcnCiiHd5TAMGFvc-BJdS0HLfnxzKX24wxElQlPtyzMny12PRHSob5bGBLfajO0_3LzGloQEpbJR2r/s640/blogger-image-2064360882.jpg" imageanchor="1" style="clear: right; font-family: -webkit-standard; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvhJ9HHfDZZSUyGGNKShv-ERG3FEW4Pd6a2yc38_flIHAvpj3Cvav6O6eJYRlVf4BcnCiiHd5TAMGFvc-BJdS0HLfnxzKX24wxElQlPtyzMny12PRHSob5bGBLfajO0_3LzGloQEpbJR2r/s640/blogger-image-2064360882.jpg"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family fun.<br><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpEvCVleYf6rmcpeHcJsLS5J8lFCcvoygoN6Osd_7IoG91zTbft3ojEeG8H2v-8NlJHyK_rtV5dC1i3T-kC2eNigPfITl4HYkPhp1rLGfqNWpOYLNDc7GiZ7cy9kdwnEUlYZ1zfas73gtC/s640/blogger-image--1741073971.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpEvCVleYf6rmcpeHcJsLS5J8lFCcvoygoN6Osd_7IoG91zTbft3ojEeG8H2v-8NlJHyK_rtV5dC1i3T-kC2eNigPfITl4HYkPhp1rLGfqNWpOYLNDc7GiZ7cy9kdwnEUlYZ1zfas73gtC/s640/blogger-image--1741073971.jpg"></a></div>Reunion fun <br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKlLVm6zfNcr28xDNzGz8W9L-1S-qDctep_2hmrbgCZtZFmi_M34UfJ3sSXL3i51t6lqD5mL934nSb7i8D6kjpeA-KbcmCbJIwtHfXxmIkXNExgzQAPovsAz6citwGOS2SJNrRQz3mWK4c/s640/blogger-image-1965814448.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKlLVm6zfNcr28xDNzGz8W9L-1S-qDctep_2hmrbgCZtZFmi_M34UfJ3sSXL3i51t6lqD5mL934nSb7i8D6kjpeA-KbcmCbJIwtHfXxmIkXNExgzQAPovsAz6citwGOS2SJNrRQz3mWK4c/s640/blogger-image-1965814448.jpg"></a></div>Cruisin'<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT9SSedMqWnbqa_RuIK_e_Algl7waDCZHEBXMJLnz9KxAfyq_azLZek9e3WWIYEBbDfh-k4lw3_rKFm-JDwUDw-GN4eoSz7FYso2mi00dw36cdxZV5Jstp74rb_e8ulPKJ_xTC7kY1ZHV6/s640/blogger-image--1231082458.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT9SSedMqWnbqa_RuIK_e_Algl7waDCZHEBXMJLnz9KxAfyq_azLZek9e3WWIYEBbDfh-k4lw3_rKFm-JDwUDw-GN4eoSz7FYso2mi00dw36cdxZV5Jstp74rb_e8ulPKJ_xTC7kY1ZHV6/s640/blogger-image--1231082458.jpg"></a></div>First day of school<br><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiXnMYxRmKWsuL4R2UqHAL12Bi3kjKwDH0iiiGjZJu7Ek-v0xQFvDfglTQrNAqf-wByJLYqa_2xLO1Fk5lcRQhBFEhEvJpwc_SSRrSmsCG3cxA5hd_5nyL_-iw9etyU8-VlmZSZ_3tkkZI/s640/blogger-image-1005392246.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiXnMYxRmKWsuL4R2UqHAL12Bi3kjKwDH0iiiGjZJu7Ek-v0xQFvDfglTQrNAqf-wByJLYqa_2xLO1Fk5lcRQhBFEhEvJpwc_SSRrSmsCG3cxA5hd_5nyL_-iw9etyU8-VlmZSZ_3tkkZI/s640/blogger-image-1005392246.jpg"></a></div>Sweet kiddos at school<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL24aE84bcq6LS7HZ0lZBJTkvrQakOIKTyjEvl0m5KANgMJ7m_bf-GEQOApeT3KKa6OR2NS898IDP9duV3Py_OyCy4wzsAdhHIdTJQ621hX_j64WmbPKWQ6P7uEqax3paBRb9fFnPyDO56/s640/blogger-image-853148213.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL24aE84bcq6LS7HZ0lZBJTkvrQakOIKTyjEvl0m5KANgMJ7m_bf-GEQOApeT3KKa6OR2NS898IDP9duV3Py_OyCy4wzsAdhHIdTJQ621hX_j64WmbPKWQ6P7uEqax3paBRb9fFnPyDO56/s640/blogger-image-853148213.jpg"></a></div>Cardio checkup </td></tr>
</tbody></table>
</div>
Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com2tag:blogger.com,1999:blog-4843526988083008045.post-86285475471802881272016-04-10T14:25:00.001-07:002016-04-10T14:50:38.759-07:00The missing puzzle piece<br><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div>For the past five years it has been overwhelmingly obvious that there is a missing puzzle piece in Emma's medical diagnosis. A few months ago we submitted a whole genome sequencing for genetic testing. This included my blood, Scott's blood, and Emma's blood. Last week I received a call from the genetics department at children's medical center in Dallas. The results were back from Emma's genetic testing and the results were that Emma has an abnormality on arid 1B gene. This syndrome that is associated with this abnormality is called Coffin-Siris syndrome. When the genetics doctor was reading the list of issues associated with this syndrome it was like she was describing Emma. Here's where it gets even more intriguing, according to the National Institute of Health, there have only been approximately 140 cases of this syndrome. That's right, Emma is one of approximately 140 people to ever be diagnosed with the syndrome. </div><div><br></div><div>Here is a brief synopsis of medical issues typically associated with CSS:</div><div><div class="rdr-box" id="symptoms" style="box-sizing: border-box; margin-bottom: 30px;"><h4 style="box-sizing: border-box; margin-top: 10px; margin-bottom: 10px;"><span style="background-color: rgba(255, 255, 255, 0);">Signs & Symptoms</span></h4><div id="wpcf-field-rd_signs_and_symptoms" class="wpcf-field-wysiwyg wpcf-field-rd_signs_and_symptoms" style="box-sizing: border-box;"><div class="wpcf-field-value wpcf-field-wysiwyg-value wpcf-field-rd_signs_and_symptoms-value" style="box-sizing: border-box;"><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">CSS is characterized by distinctive abnormalities of the head and facial (craniofacial) region with affected individuals often described as having coarse facial features that become more prominent with age. Affected individuals may have an unusually small head (microcephaly); a wide mouth with full, prominent lips; a broad nasal tip; a low nasal bridge; and an abnormally long vertical groove between the nose and the upper lip (philtrum). Additional features may include thick eyebrows, long eyelashes, and generalized excessive hair growth (hypertrichosis) with the exception of the scalp hair, which tends to be relatively sparse (scalp hypotrichosis). Reports suggest that sparse scalp hair improves with age.</span></p><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">Individuals with CSS also have characteristic skeletal abnormalities. For example, certain fingers and toes (digits), particularly the fifth fingers (“pinkies”) and toes, may be unusually short due to absence or underdevelopment (hypoplasia) of the end bones (terminal phalanges) within these digits. The fingernails and toenails may also be underdeveloped or absent. Additional abnormalities may include dislocation of the inner forearm bone (radius) at the elbow, deformity of the hip (coxa valga), or unusually small or absent knee caps (patellae).</span></p><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">Early in life, infants with CSS typically experience feeding difficulties, vomiting, slow growth and weight gain (failure to thrive) which may have begun while the infant was still in the womb (intrauterine growth retardation), and frequent respiratory infections. In addition, affected infants and children may have hypotonia, abnormally loose joints, delayed bone age (2 to 3 years behind the chronological age), and mild to severe intellectual disability. Affected infants and children may also have mild to severe speech delays, where expressive language is affected more severely than receptive language, as well as moderate to severe delays in motor skills such as sitting and walking. Reports suggest that on average, affected children learn to sit up at 12 months (typically occurs at 6 to 8 months), walk at 30 months (typically occurs at 9 to 18 months), and speak at 24 months (typically begins around 12 months).</span></p><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">Affected individuals may also have eye (opthamologic) abnormalities. This can include drooping of the upper eyelid (ptosis), clouding of the lens of the eye (cataracts), and misalignment of the eyes (strabismus, commonly known as “lazy eye”).</span></p><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">CSS has been reported to manifest kidney (renal) or genitourinary abnormalities in some affected individuals. There have been reports of affected individuals with fused kidneys at the lower end (horseshoe kidney) and the urethra – .</span></p><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">Individuals with CSS may also have gastric abnormalities which may include one portion of the bowel sliding into the next like a telescope (intussusception) or an opening in the diaphragm allowing abdominal organs to push up into the chest cavity (diaphragmatic hernia).</span></p><p style="box-sizing: border-box; margin: 0px 0px 10px;"><span style="background-color: rgba(255, 255, 255, 0);">Less commonly, affected individuals may have additional physical abnormalities, such as choanal atresia, a malformation in which a bony or thin layer of tissue blocks the passageway between the nose and throat, leading to breathing difficulties. Some individuals with CSS may also have heart abnormalities at birth. In addition, a brain abnormality known as Dandy-Walker malformation has been reported in some cases. This condition is characterized by cystic malformation and expansion of one of the cavities in the brain (fourth ventricle). Dandy-Walker malformation is usually associated with an abnormal accumulation of cerebrospinal fluid (CSF) in the skull (hydrocephalus), resulting in increased fluid pressure, a rapid increase in head size, abnormal prominence of the back region of the head (occiput), and/or other associated findings. Some individuals with CSS may also have partial or complete absence of the band of nerve fibers that joins the two hemispheres of the brain (agenesis of the corpus callosum) and fewer folds in their brain (gyral simplification). Some affected individuals may also experience hearing loss, seizures and tics. There have been reports of liver cancer (hepatoblastoma) in affected individuals, but the link between CSS and tumor risk needs to be further investigated.</span></p></div></div></div><div class="rdr-box" id="causes" style="box-sizing: border-box; margin-bottom: 30px;"><font color="rgba(0, 0, 0, 0.7019607843137254)"><span style="background-color: rgba(255, 255, 255, 0);"><a name="causes" style="box-sizing: border-box; text-decoration: none;"></a></span></font></div></div><div> (National Institute of Health)</div><div><br></div><div>When I received the news from our genetics team, I felt this overwhelming since of relief....this doesn't change Emma's prognosis, but perhaps it will help us better understand how to better care for her. I'm honestly glad we didn't know five years ago. I'm not sure what the medical team would've done or not done. Since this is such a rare genetic abnormality, little is known which makes it difficult. </div></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">You see, what's hard is that we have had phenomenal care over the past six years. Surgeons, doctors, nurses, respiratory therapists, and other medical professionals have worked tirelessly to try to figure Emma out, scratched their heads at her body's responses to surgeries, meds, procedures, etc. They have consulted other doctors, experimented on her, went against the norms, etc. It has been frustrating for both them and Scott and I to watch her struggle and reject what should work. Maybe, just maybe we were/are fighting something that is fighting harder back, creating obstacles that haven't been figured out yet, and adding extra stress on Emma's body. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I don't want Emma to be one of 140 people in the world; I don't want every aspect of Emma's life to be so incredibly hard; I don't want her to stump all the doctors, I don't want her to not have any more surgical/transplant options; however, that is our life....our obstacles.....our blessings in disguise.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Emma will not be defined by statistics....by what ifs.....You see, Emma knows no different. She is surrounded by family and friends who love her for WHO she is. We have never underestimated her...more importantly, we have never underestimate God. Our God is bigger...no matter the Earthly outcome. We know. Our faith gets us up in morning to continue living, loving, and being a light for HIM! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Thank you for the continued prayers, love, and support. Enjoy some pics of our sweet sassy girl loving life!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">God is good! All the time! God is good!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Sarah </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX4CqDjnqJ-T5isA7kmJekOO9DlTCDzZ2xEvW4dEAv19iRlCYUPLsEiwDj50so-z7aCopNuEyNdqfKjDTz4cwwBjmqNmYxrq9MkcDAWRvYv6gXsGZQXW4MB1p0TiXYeMRXnZZog1eiGGi8/s640/blogger-image-1990769894.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX4CqDjnqJ-T5isA7kmJekOO9DlTCDzZ2xEvW4dEAv19iRlCYUPLsEiwDj50so-z7aCopNuEyNdqfKjDTz4cwwBjmqNmYxrq9MkcDAWRvYv6gXsGZQXW4MB1p0TiXYeMRXnZZog1eiGGi8/s640/blogger-image-1990769894.jpg"></a></div>Weekly cardio visit </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsJTkZyzCfK5eeamxGODFTBC5EP1u7JW0X9HhVmTDlUc81mcBeNAo_C2MpzTBRaX1MPvgkgS4obtLqqYGzpnicMbZN8SYg_Soc9ubXUC7EmUVfUIqDpwgMDr6csbeulEyOHmOfWuGjljrP/s640/blogger-image-356925305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsJTkZyzCfK5eeamxGODFTBC5EP1u7JW0X9HhVmTDlUc81mcBeNAo_C2MpzTBRaX1MPvgkgS4obtLqqYGzpnicMbZN8SYg_Soc9ubXUC7EmUVfUIqDpwgMDr6csbeulEyOHmOfWuGjljrP/s640/blogger-image-356925305.jpg"></a></div>Wagon fun</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0j52l-kjNHvMGt6EcNBIT1kw3VB4xMLnKZHfZYiGjTTfPWc4ue2jv95NW_JvbmGbWvKvzEhbvvaqEKkQsmOrewLTmaxIRQUm8WMlD954dhrcv7Ba8dpiVNxQGEqqZdYLUmaYa4dZNXf9o/s640/blogger-image-74622087.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0j52l-kjNHvMGt6EcNBIT1kw3VB4xMLnKZHfZYiGjTTfPWc4ue2jv95NW_JvbmGbWvKvzEhbvvaqEKkQsmOrewLTmaxIRQUm8WMlD954dhrcv7Ba8dpiVNxQGEqqZdYLUmaYa4dZNXf9o/s640/blogger-image-74622087.jpg"></a></div>Uncle Caleb is silly </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFttnlIUKUk1fgkfx-eHpL-smnZTAxGcXYVahuuhzSoSfuDmOlbJnOJY-ANftwvb2GVyqhJsI_RQ_MbrvJ4v_hSlEwWUMQlOzE2EyZZQakabzpHIduy_29ms7UA3emQTR52N_GCcKWdnj-/s640/blogger-image-1215165412.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFttnlIUKUk1fgkfx-eHpL-smnZTAxGcXYVahuuhzSoSfuDmOlbJnOJY-ANftwvb2GVyqhJsI_RQ_MbrvJ4v_hSlEwWUMQlOzE2EyZZQakabzpHIduy_29ms7UA3emQTR52N_GCcKWdnj-/s640/blogger-image-1215165412.jpg"></a></div></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Easter Egg Hunt with the Cousins</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgG2PxDwQD7cK_2OlGLTQAaRONCco2Y5ZdGbLe4x3GNaA8qGDW9p7TIA9rD3o6iTK4JBA_T5pgJfjwH0vaKiBxP_wantIvJi9PxE0z4IfLvm2G90EAC2mSTr-fil6QaCYloiRvED_9i6wR/s640/blogger-image--1889672790.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgG2PxDwQD7cK_2OlGLTQAaRONCco2Y5ZdGbLe4x3GNaA8qGDW9p7TIA9rD3o6iTK4JBA_T5pgJfjwH0vaKiBxP_wantIvJi9PxE0z4IfLvm2G90EAC2mSTr-fil6QaCYloiRvED_9i6wR/s640/blogger-image--1889672790.jpg"></a></div>Fun with PaPa and Nana</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDBZWJcgb8N1XATa3HI_e0ATPX_lKU8HtAs_oxUtv7wvH0EJaqZPdyGvgR5ZuJIOCuhR_l-XII9gDayMjvrbKZpXBSEKoJHZc4sNLsesCji1rUpLl4JOH4JckOfUr8T5hG8JfDbXZ_8qqs/s640/blogger-image--1586400507.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDBZWJcgb8N1XATa3HI_e0ATPX_lKU8HtAs_oxUtv7wvH0EJaqZPdyGvgR5ZuJIOCuhR_l-XII9gDayMjvrbKZpXBSEKoJHZc4sNLsesCji1rUpLl4JOH4JckOfUr8T5hG8JfDbXZ_8qqs/s640/blogger-image--1586400507.jpg"></a></div>Fun with the Estes crew</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaIA6pxP0MrOYJkOouSM6BcpeH-1v2sTYZpbL61qfvaUGLivp_jbjRlbQZsH1zsyY4gMXm_ho0OG4vBTPxflt-JJUPdRHs8ztJl-HSth8RtnCV3y9DiCs_dk3qdJxxHyeugYWdwRojBRSq/s640/blogger-image-1631566772.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaIA6pxP0MrOYJkOouSM6BcpeH-1v2sTYZpbL61qfvaUGLivp_jbjRlbQZsH1zsyY4gMXm_ho0OG4vBTPxflt-JJUPdRHs8ztJl-HSth8RtnCV3y9DiCs_dk3qdJxxHyeugYWdwRojBRSq/s640/blogger-image-1631566772.jpg"></a></div>Easter Beauty</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5yFf3dKstvILMsv2W7POpbTc4tJjhfKvd5VzCpyR2dHItS8JrNkfQeeiSUYM2dncOpwPew0JTWtrwS-wSDIyKqB2vAghQ0iMl04nKYpiL3xz3s4OXshvWV90k1w7_ylCNSPIcirAK8ISF/s640/blogger-image-175470188.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5yFf3dKstvILMsv2W7POpbTc4tJjhfKvd5VzCpyR2dHItS8JrNkfQeeiSUYM2dncOpwPew0JTWtrwS-wSDIyKqB2vAghQ0iMl04nKYpiL3xz3s4OXshvWV90k1w7_ylCNSPIcirAK8ISF/s640/blogger-image-175470188.jpg"></a></div>Best Buds</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb-LKXw0wCyjSs4CBs2MelhlU6L6kAhHzUwz9KAM0Zd00V8q3i1TS2JfW1WOZyS2cvywslGlJc9ZP4ylJqpawux7lB8mfY3zuBgMpdX_Wjy8CbXtUeiYaOa3wnnaGCfQPCT-_RWwkiQSs8/s640/blogger-image-2069746614.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb-LKXw0wCyjSs4CBs2MelhlU6L6kAhHzUwz9KAM0Zd00V8q3i1TS2JfW1WOZyS2cvywslGlJc9ZP4ylJqpawux7lB8mfY3zuBgMpdX_Wjy8CbXtUeiYaOa3wnnaGCfQPCT-_RWwkiQSs8/s640/blogger-image-2069746614.jpg"></a></div>Heart Center Picnic Fun</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWchLI3sdT4bm9xSbGsuCr25BBbAd_LbrM08Vg4_HLmh9Jt_jZQ3c-KwX2Z2wBdGzZYDtoEg5R6Ow3y1Km0iV4YqVV7yEeBDEVbbqNmm6Q7P3NRWNwzWCQlY2kIAjG5k05lgLTCLVOfztp/s640/blogger-image--657197787.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWchLI3sdT4bm9xSbGsuCr25BBbAd_LbrM08Vg4_HLmh9Jt_jZQ3c-KwX2Z2wBdGzZYDtoEg5R6Ow3y1Km0iV4YqVV7yEeBDEVbbqNmm6Q7P3NRWNwzWCQlY2kIAjG5k05lgLTCLVOfztp/s640/blogger-image--657197787.jpg"></a></div>Family Fun</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUKFu53LnNI1XM6ngCvf5zHnLDHQ8U9ksiJADGPiRcJLuurlhtyqxFi8ygyWBe53oWLYwKZMHXP-lsy96d3035Pz0Mcqkb7wSjw3tw1-_8q3gelp4L9YmQKMgAQDmSJbKVthpCbNLVO2mG/s640/blogger-image--687822266.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUKFu53LnNI1XM6ngCvf5zHnLDHQ8U9ksiJADGPiRcJLuurlhtyqxFi8ygyWBe53oWLYwKZMHXP-lsy96d3035Pz0Mcqkb7wSjw3tw1-_8q3gelp4L9YmQKMgAQDmSJbKVthpCbNLVO2mG/s640/blogger-image--687822266.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM0rtUa1CIDjuQ_nhuVGg3P4dum6zLlXfJT_VztRZZh0-kBfe-JePwDvjZTNSRMIruXGnHUG-CYJY0Vng2ckJ-9y0Ux2_pugRgipNUvEijbNu2lz0n5bqj_PMl47QIaKVE41xWdfHkyYMV/s640/blogger-image--174336923.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM0rtUa1CIDjuQ_nhuVGg3P4dum6zLlXfJT_VztRZZh0-kBfe-JePwDvjZTNSRMIruXGnHUG-CYJY0Vng2ckJ-9y0Ux2_pugRgipNUvEijbNu2lz0n5bqj_PMl47QIaKVE41xWdfHkyYMV/s640/blogger-image--174336923.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq60V9mfd3-_J9hnImbFN68KVsfRBaUFRHuftB2VPBttelEOgWLOSJ-0kxGqZCNZojyEzhWU0FiO7QuqM8ZTYhCzqtdqC_rUnuT5BCPMHuiWhJgeszHbCxWfiy81yPEM_8xqf0I0GCUuJd/s640/blogger-image--451525094.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq60V9mfd3-_J9hnImbFN68KVsfRBaUFRHuftB2VPBttelEOgWLOSJ-0kxGqZCNZojyEzhWU0FiO7QuqM8ZTYhCzqtdqC_rUnuT5BCPMHuiWhJgeszHbCxWfiy81yPEM_8xqf0I0GCUuJd/s640/blogger-image--451525094.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLokt4A0zUd0U7ka46NTQJulr7dTKc4bq6hofz65fhg9F1s1YqIq0oDaWpHjjWAb8aBW6NlzfcP55X8MbFyZwjo_uR40I25HEMwkOqumHpyUAlGa_Nf2KfWshvANL8YIrlqIZdYEmo_gTq/s640/blogger-image--1068712968.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLokt4A0zUd0U7ka46NTQJulr7dTKc4bq6hofz65fhg9F1s1YqIq0oDaWpHjjWAb8aBW6NlzfcP55X8MbFyZwjo_uR40I25HEMwkOqumHpyUAlGa_Nf2KfWshvANL8YIrlqIZdYEmo_gTq/s640/blogger-image--1068712968.jpg"></a></div><br></div>Family Pics by Rustic Images</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinGdS3DM_MF2HT9Kx2Ro0IwbZJzX9Sc34YmJ4RDLAcxRebABwXmnZrDrsgXX7oJH9GCLB_uPpTKtikUNlyvMD1ZHxJRUtuAhcT4uTvHSOxUy7pULarxUUB8p0LzYizA4t_syJuEqB278DN/s640/blogger-image-323741290.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinGdS3DM_MF2HT9Kx2Ro0IwbZJzX9Sc34YmJ4RDLAcxRebABwXmnZrDrsgXX7oJH9GCLB_uPpTKtikUNlyvMD1ZHxJRUtuAhcT4uTvHSOxUy7pULarxUUB8p0LzYizA4t_syJuEqB278DN/s640/blogger-image-323741290.jpg"></a></div>Cousin Rhett being a big helper! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com1tag:blogger.com,1999:blog-4843526988083008045.post-56840430602316590202016-02-15T14:02:00.001-08:002016-02-15T20:16:33.046-08:00CHD Awareness Photo Challenge Days 1-15<div class="separator" style="clear: both;"><div class="separator" style="clear: both;"> I have not shared anything on the blog for CHD awareness week like I normally do. However, I wanted to share a challenge that I'm participating in during February. Each day has a different theme that deals with an aspect of congenital heart defect awareness. I have included days 1 through 15 in this blog. Thank you again for always supporting our sweet little heart hero. This is a special time for us and we work diligently to try to educate others on what it is like to live with a CHD.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisuV-Kkq61fN9r3kCSYSUanw0guft_0tYipLbOCJ56_SUSHV19P3Mdz_zaX7bp3iUVstAqiFm3GwarTMeTAZGus5PZTWMhLcAXdETGEqAPnwxbIvIp2gzGN6wtYrqeoATOVIPOFB3cw8Wq/s640/blogger-image--1925747854.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisuV-Kkq61fN9r3kCSYSUanw0guft_0tYipLbOCJ56_SUSHV19P3Mdz_zaX7bp3iUVstAqiFm3GwarTMeTAZGus5PZTWMhLcAXdETGEqAPnwxbIvIp2gzGN6wtYrqeoATOVIPOFB3cw8Wq/s640/blogger-image--1925747854.jpg"></a></div><div class="separator" style="clear: both;">CHD awareness month is here, so I will be participating in a daily awareness photo. Day 1: diagnosis....Emma was diagnosed at 19 weeks prenatal with a severe congenital heart defect. We would learn a few weeks later that the defect was Hypoplastic Left Heart Syndrome with intact atrial septum. I encourage all expectant mothers to ask about the heart during their anatomical ultrasound. There are over 40 types of CHDs. Early diagnosis helps to save lives. ❤️</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKCzLLNHkSRdfXnnnyk3OqeskhEiPDEwkbeMy3Jru0oD0haktKEBho0Dts2h1_qJc9-5lJ7N2jk_Z2P9vDVQnid1ckW-HRFmmEVijBaNCaa0Iikf86imZ8SWBMrrvYtXEeBY_9hqAPGDs/s640/blogger-image-439768480.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKCzLLNHkSRdfXnnnyk3OqeskhEiPDEwkbeMy3Jru0oD0haktKEBho0Dts2h1_qJc9-5lJ7N2jk_Z2P9vDVQnid1ckW-HRFmmEVijBaNCaa0Iikf86imZ8SWBMrrvYtXEeBY_9hqAPGDs/s640/blogger-image-439768480.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Awareness Month Photo Challenge Day 2: Surgeries/Meds/Interventions: These five photos represent the five open heart surgeries Emma has fought through. #chdwarrior #mendedlittlehearts #chdawareness #RockYourScar #HLHS</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjcYnmBF44sdvrVoQ1G5O4VIijdb18vQUdVQK0H9l17gxv8WXaBdQAA42EV7lTQ5aXkKuACmMGa8otVLOBzUmKBuIS0leqzrcOWzL89bqCDUA897U21NBjzrybA17qjKGKRVVszQySHpjN/s640/blogger-image-37027971.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjcYnmBF44sdvrVoQ1G5O4VIijdb18vQUdVQK0H9l17gxv8WXaBdQAA42EV7lTQ5aXkKuACmMGa8otVLOBzUmKBuIS0leqzrcOWzL89bqCDUA897U21NBjzrybA17qjKGKRVVszQySHpjN/s640/blogger-image-37027971.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Photo Challenge Day 3: Family: We are truly blessed with supportive Family and friends who are like family. Scott and I truly do not know what we would do without their encouragement, love, and unwavering support.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMQ4pioDlV232Kqk2n_jsd2rut48G-QHWaLSe3D5037XFG2jP276ARTlBAujWbB-7lmN9zGkiQmGRB3lL3Ne_sa2thlo16-QPPX0VS054k0nu3FUVn4w7U5naDMk5rOPOkjrplavD89lY/s640/blogger-image--394158514.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMQ4pioDlV232Kqk2n_jsd2rut48G-QHWaLSe3D5037XFG2jP276ARTlBAujWbB-7lmN9zGkiQmGRB3lL3Ne_sa2thlo16-QPPX0VS054k0nu3FUVn4w7U5naDMk5rOPOkjrplavD89lY/s640/blogger-image--394158514.jpg"></a></div><div class="separator" style="clear: both;"><br></div>Day 4: CHD awareness photo challenge: Hospital: Emma has been treated at both Children's Medical Center (Children's Health) in Dallas and Boston Children's Hospital in Boston. The hospitals varied greatly in their structure and organization; however, what was not different was the care, love, and heart put into taking care of our precious Emma. #chdawareness #cmc #bch</div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1M2tEzj0pDIzdPF4mszHvUi7tSoUEZ76ZsFXLE8usgfkQsEQQWlZIImf9ISJ8RsNWH45E0eRtStdkBw840jvhMzNol5tHz6KfJq-K1WtPswL37BuBIxuG3mocwtPmt2B2_GJiYwHnb_6O/s640/blogger-image-512885192.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1M2tEzj0pDIzdPF4mszHvUi7tSoUEZ76ZsFXLE8usgfkQsEQQWlZIImf9ISJ8RsNWH45E0eRtStdkBw840jvhMzNol5tHz6KfJq-K1WtPswL37BuBIxuG3mocwtPmt2B2_GJiYwHnb_6O/s640/blogger-image-512885192.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Awareness Month Photo Challenge Day 5: Cardiologist: Dr. Lemler has literally been with us since before Emma was born. He has been with us during extremely hard decisions, sat at the hospital with us in the middle of the night during our hardest moments, celebrated with us during unexpected successes, come to our rescue more than once during inpatient stays and ER visits, answered panicked phone calls, and supported us throughout all of Emma's ups and downs. We give each other a hard time, but we are honored to have him manage Emma's care. #chdaware #HLHS #cardiologist</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQqdxuK59RdIoSNMMExMLrYoE_8Q0hiYDTiA6C7LZf6PV2vvhy8G2avbsf4qJMKPl840R8jYdT8DhAKWr3mWxiO4iVtz0BOQj_4VEdK9qpeoH3_KylYDB05sx2aFfrrrN1M7HHWM7l1RJ/s640/blogger-image-875006901.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQqdxuK59RdIoSNMMExMLrYoE_8Q0hiYDTiA6C7LZf6PV2vvhy8G2avbsf4qJMKPl840R8jYdT8DhAKWr3mWxiO4iVtz0BOQj_4VEdK9qpeoH3_KylYDB05sx2aFfrrrN1M7HHWM7l1RJ/s640/blogger-image-875006901.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div>CHD Awareness Photo Day 6: Hope: I could go on and on about hope, but I will just leave this here. We continue to hold on to hope and trust in God's plan for our tough little girl who was born with half a heart. #CHDaware #HLHS</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKWDdqejQj_coXkOvcI-FV60OEwrDnsbN2In-gJNxWF6jSsurrz88-lfF7kY_y73AjqjVQ6JgpHw0bNA1Rv3Jg82-PF-wfexZ3Wn9m5NtmnUuOOfQoNo6rFfCSuXZlPsX-O7lI5KWVoWfs/s640/blogger-image--766488013.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKWDdqejQj_coXkOvcI-FV60OEwrDnsbN2In-gJNxWF6jSsurrz88-lfF7kY_y73AjqjVQ6JgpHw0bNA1Rv3Jg82-PF-wfexZ3Wn9m5NtmnUuOOfQoNo6rFfCSuXZlPsX-O7lI5KWVoWfs/s640/blogger-image--766488013.jpg"></a></div>CHD Awareness Photo Day 7: Red and Blue: What does red and blue mean to me? The diagram on the left shows Emma's heart defect at the different stages of palliation. Notice how the red (or oxygenated blood) and blue (unoxygenated blood) mix. This causes Emma's lower oxygen saturation levels which makes her appear blue. Red and blue are also the colors we use to represent congenital heart defect awareness. #chdaware #HLHS #hearthero</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBuvvWW_lVoBZnFMBomA3456vF6ukfxerLD468wSNZ-hMOMIL8qwtyweM1YasbOAtauHShLpD1FBMBjlxHg5hvxGwydqdF-ux3NRqK_5es3DDIJ3U_Z9PdA9UdmmGZneLOsb0jWyO7ZOR3/s640/blogger-image--988684956.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBuvvWW_lVoBZnFMBomA3456vF6ukfxerLD468wSNZ-hMOMIL8qwtyweM1YasbOAtauHShLpD1FBMBjlxHg5hvxGwydqdF-ux3NRqK_5es3DDIJ3U_Z9PdA9UdmmGZneLOsb0jWyO7ZOR3/s640/blogger-image--988684956.jpg"></a></div><div class="separator" style="clear: both;">CHD Awareness Photo Day 8: CHD Facts: My Emma is 1 in 110....Are you CHD aware? Every 15 mins a child is born with a CHD. #chdaware #HLHS</div><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbfhNpsX5AtqStumks3ulLbNB9955rQ6HriXxN8y8rsgbkA1dYpfdpyyr8FXSL4X29NSXame5btHDED6XUocBZURYSu2Ix6KqLnVWcWxflrowqf_4aGG_qlU7Vj9SIq_wbsa8PaCOX6qhI/s640/blogger-image-386833038.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbfhNpsX5AtqStumks3ulLbNB9955rQ6HriXxN8y8rsgbkA1dYpfdpyyr8FXSL4X29NSXame5btHDED6XUocBZURYSu2Ix6KqLnVWcWxflrowqf_4aGG_qlU7Vj9SIq_wbsa8PaCOX6qhI/s640/blogger-image-386833038.jpg"></a></div><div class="separator" style="clear: both;"><br></div>CHD Awareness Photo Day 9: Awareness: I am a coordinator for a group called Mended Little Hearts of Dallas. I do this to share hope, education, support, and awareness. Emma is the reason I am so passionate about the work I do. #chdaware #HLHS #mendedlittlehearts #RockYourScar</div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNxJAr9O64O42e5etlwcy1C44Q3Gto0fbPCtcYBEtYa20G_c5fJbFJzL47Kaz19PNTA1qb573x9hruYZApf1cBuRdyD4NWPhY8VwcLwb6iHQ1Csp5fmFQ5QOhVpmZfLGCEyteE-hGqZ1jN/s640/blogger-image-1987937197.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNxJAr9O64O42e5etlwcy1C44Q3Gto0fbPCtcYBEtYa20G_c5fJbFJzL47Kaz19PNTA1qb573x9hruYZApf1cBuRdyD4NWPhY8VwcLwb6iHQ1Csp5fmFQ5QOhVpmZfLGCEyteE-hGqZ1jN/s640/blogger-image-1987937197.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Awareness Week Day 10: #RememberOurHearts #CHDaware</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw88JAuuGlxXBY7ud97Z1prQu_fSMzJa8c1fj6_hLDF9NchCGSBHddpz0DFcJOHW7qkywfWGDqMBGuHVIUaP_gfGmHHob03j4cROuTVDuc8-fK3zU621OGS1kSnjiFk0LIf-dyryrtl6Hu/s640/blogger-image--326592752.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw88JAuuGlxXBY7ud97Z1prQu_fSMzJa8c1fj6_hLDF9NchCGSBHddpz0DFcJOHW7qkywfWGDqMBGuHVIUaP_gfGmHHob03j4cROuTVDuc8-fK3zU621OGS1kSnjiFk0LIf-dyryrtl6Hu/s640/blogger-image--326592752.jpg"></a></div><br></div>CHD Awareness Photo Day 11: Favorite Quotes! I have so many, but here are a couple. ❤️❤️❤️</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsTTDwv7f7yRkIXixkrEhNjCcwwG-NuihDhJKJIBoj6TnWv29GGXGNAf12W8SXrUY6LhN6iF7nAGM6mcDUVh8jCHu46ngNVlaxOxkp5hFEwINoFfxy0lQXa_PYYWFwQi4u4l8duZ5hfRed/s640/blogger-image-449313453.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsTTDwv7f7yRkIXixkrEhNjCcwwG-NuihDhJKJIBoj6TnWv29GGXGNAf12W8SXrUY6LhN6iF7nAGM6mcDUVh8jCHu46ngNVlaxOxkp5hFEwINoFfxy0lQXa_PYYWFwQi4u4l8duZ5hfRed/s640/blogger-image-449313453.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Photo Challenge Day 12: What I wish people knew: I wish people knew that CHDs impact more of a child's life than simply their heart. Due to Emma's CHD, she is challenged every day with developmental delays and other organ issues. Also, I get asked frequently if Emma's heart is fixed. There is not a cure for her CHD.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJR-tmTqzWBYiDyL6UnbGivqq8kLd9J4OLJuPWq2TxBPed6St2fdyAPVQG3S4bfXQUocgUgzgYBQmKD-USpY4Zt95NGLU3bqV_N5XLgZF9PxxfaGM8p56to-grc8AXj83sXhNdgvQ-b1IN/s640/blogger-image--1376353267.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJR-tmTqzWBYiDyL6UnbGivqq8kLd9J4OLJuPWq2TxBPed6St2fdyAPVQG3S4bfXQUocgUgzgYBQmKD-USpY4Zt95NGLU3bqV_N5XLgZF9PxxfaGM8p56to-grc8AXj83sXhNdgvQ-b1IN/s640/blogger-image--1376353267.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Awareness Photo Day 13: Heart Family: Being the parents of a child with a congenital heart defect can feel very lonely; however, meeting many other heart families along the way, whether in person or through social media, living next-door to them in the hospital or meeting them at a heart event gives you someone to relate to, vent to, cry with, and celebrate with. #CHDaware #heartfamily #mlh</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFzd0R_gKKSmj6tnZLX1LaoknVMKwtP5vJoR8R7UrFQ4deQAtXI634MpXVcT4fpnW8w2NNYMRiPyN5Ft6hwIYT8fGr7mGUzY-ugtlklNt6rr9Kj8WpOGApLhKCVSm8kDomDnE0FFdXG0-3/s640/blogger-image-1643922827.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFzd0R_gKKSmj6tnZLX1LaoknVMKwtP5vJoR8R7UrFQ4deQAtXI634MpXVcT4fpnW8w2NNYMRiPyN5Ft6hwIYT8fGr7mGUzY-ugtlklNt6rr9Kj8WpOGApLhKCVSm8kDomDnE0FFdXG0-3/s640/blogger-image-1643922827.jpg"></a></div><br></div><div class="separator" style="clear: both;">CHD Photo Challenge Day 14: Heart: When most people think of Valentine's Day , they think of hearts and love. Don't get me wrong, the 14th of February makes me think of love and hearts and red and pink; however, since 10/4/10 when I think of hearts, I think of my half a heart hero. Her heart is shown in the top picture.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh__4b-0p8gnQFO5JMPkI6VXDpa92xEGp9qqEZ4ExKr1xlgfCGLl30-pPuU1nzFZsxEjkrcUghO1FEkBypLgXaME_uJ_tY2CshWn6ZxsAw83V-xwtdgz0AN8P6JgvqNFku5NRHsc1VclLp5/s640/blogger-image--12966900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh__4b-0p8gnQFO5JMPkI6VXDpa92xEGp9qqEZ4ExKr1xlgfCGLl30-pPuU1nzFZsxEjkrcUghO1FEkBypLgXaME_uJ_tY2CshWn6ZxsAw83V-xwtdgz0AN8P6JgvqNFku5NRHsc1VclLp5/s640/blogger-image--12966900.jpg"></a></div><br></div><br></div>CHD Photo Awareness Day 15: Nurses: we have been very blessed with caring, loving, and attentive nurses from the beginning. From our nurses at CMC to our nurses at Boston and home, Emma has been surrounded by amazing advocates that aid in her care. I don't have pictures of everyone, but please know that we are so thankful for all of her nurses who worked tirelessly to help Emma get to where she is today.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Emma is doing well. She is very busy in her therapies and school. We continue to travel to the cardiologist every week for her PICC line care and lab monitoring. Thank you for your continued prayers and thoughts.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">God is good! All the time! God is good!</div><br></div><br></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-90541260716531869982015-12-03T07:36:00.001-08:002015-12-03T09:21:41.287-08:00We're Back!! 😉<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Hello faithful blog followers. I want to once again begin by apologizing. I have been more then a little delinquent in keeping up with the blog over the past several months. In part it's been because we've been busy; and also because I'm in a time crunch with my dissertation; and also because we're living life which is something we really didn't get to do for the better of eight months. </span><div><font color="rgba(0, 0, 0, 0.7019607843137254)" face="UICTFontTextStyleBody"><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></span></font></div><div><span style="text-decoration: -webkit-letterpress; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">In October, I did sit down and do a brief medical update and a fun birthday post; however, that post got lost after I had spent hours of writing a clever poem about the last five years of Emma's life (I know, save save save) Anyways, I never got back around to finishing or publishing those posts, so today I will do my best to update you on the last several months in a fun post and then do a post about her medical issues.</span><font color="rgba(0, 0, 0, 0.7019607843137254)" face="UICTFontTextStyleBody"><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></span></font><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">In September, Emma was asked to be a part of an event called the Portrait Project. This event raises awareness for children fighting big battles. Emma had her picture taken by a professional photographer and unveiled it at an event in Dallas. The event raised money for the cancer center at Children's Health in Dallas. We were honored to be asked to be a part of the event and the portrait that was taken was beautiful.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitZ3ddlKh9G_HFCQ-H1yRrM01CCztwnadAteyYoYIoEmYyqmKg-VNm7fbjRwCIpQOdVpdd9XsICX-Ce2ksc9TIH57J9E564JIb2nCpxkd-hf4yzN1I5hjuvbOZkjVjYNM2BHDNOyUUzwiY/s640/blogger-image-797971543.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitZ3ddlKh9G_HFCQ-H1yRrM01CCztwnadAteyYoYIoEmYyqmKg-VNm7fbjRwCIpQOdVpdd9XsICX-Ce2ksc9TIH57J9E564JIb2nCpxkd-hf4yzN1I5hjuvbOZkjVjYNM2BHDNOyUUzwiY/s640/blogger-image-797971543.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwQzyEDmuDCP9vvGSmDmedUBdt9dgbB4USF_8hObof3qXNL66Rpe91KlX_WxYhYilaxMTKiVnXrCURP1TviFR3Gdm2MT345fQZGuk4dVDCNKxDgrz58ciBt4yWaJ6YPzffGGERmtQ4U7OW/s640/blogger-image-2059759421.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwQzyEDmuDCP9vvGSmDmedUBdt9dgbB4USF_8hObof3qXNL66Rpe91KlX_WxYhYilaxMTKiVnXrCURP1TviFR3Gdm2MT345fQZGuk4dVDCNKxDgrz58ciBt4yWaJ6YPzffGGERmtQ4U7OW/s640/blogger-image-2059759421.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjteYYYivQGFR3TK9A5d5YUhTqffwnId88_z6jYiuSswK8eNoxvBW1lowEh1Njoi8jNuZMWgqI89Rx9513-8n5I1YU7n4ZPlAjN5tsTKSxUni-Dqae05BjL5izG3LS7-JNSSvmxF7m3B9Ez/s640/blogger-image-1741842911.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjteYYYivQGFR3TK9A5d5YUhTqffwnId88_z6jYiuSswK8eNoxvBW1lowEh1Njoi8jNuZMWgqI89Rx9513-8n5I1YU7n4ZPlAjN5tsTKSxUni-Dqae05BjL5izG3LS7-JNSSvmxF7m3B9Ez/s640/blogger-image-1741842911.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbleWykgm_aI2Uq44uP82sfPdaCo9bp2T8Rv3bvn10KtFpJdmEJE6kypRQnDh5sFkWxZsw3iuTmg36Wd6Q1rhcCw1MWK1trAxdcOFpNSyuLWH01QbRlEXe3OPa0bFv0hgyQ99v109D7ILs/s640/blogger-image-1153797381.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbleWykgm_aI2Uq44uP82sfPdaCo9bp2T8Rv3bvn10KtFpJdmEJE6kypRQnDh5sFkWxZsw3iuTmg36Wd6Q1rhcCw1MWK1trAxdcOFpNSyuLWH01QbRlEXe3OPa0bFv0hgyQ99v109D7ILs/s640/blogger-image-1153797381.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbwxUulyZBPBS8BB3qLeQNFsxI9967z01YpoEO40ax6QyppnE0cCw79AGBV7I7KgGr7VOxbgCG6Lhzyrh3CaBnRq9IkNDcc5ZaLj-lesW45jt4NXZwiVf82VqSN61eeUiCgbD_7O5fehyphenhyphenJ/s640/blogger-image-1971610419.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbwxUulyZBPBS8BB3qLeQNFsxI9967z01YpoEO40ax6QyppnE0cCw79AGBV7I7KgGr7VOxbgCG6Lhzyrh3CaBnRq9IkNDcc5ZaLj-lesW45jt4NXZwiVf82VqSN61eeUiCgbD_7O5fehyphenhyphenJ/s640/blogger-image-1971610419.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Emma started the month of October with the bang. Her PICC line broke and she was admitted to the hospital a few days before her birthday to get a new one placed. The team worked tirelessly to get her out before her birthday party and we arrived home just a few hours before the fun began. Being the big five-year-old girl that she is, Emma is getting to make a lot of decisions. She told me that this year she wanted a monkey and alligator birthday party. While this may seem strange to some, feel free to YouTube "five little monkeys swinging in the tree," and you will see why Emma's favorite song became the theme for her birthday party. Emma was surrounded by family and friends on that day and had a good time despite being sleep deprived and sore from a recent procedure and hospital stay. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYdEy5JAQy-YS7CaH_7mEos7yEsTTEMmlVELH-Yni726cdux6G6tUTB8yHLdCXYD6rh3crQq1iyc-MVj1EDLP73UsHOLA1N1vbnSR1_3kyiC8p96t9hNmFAoZzLRMTAEDofYn2IjBoWHuM/s640/blogger-image-977534353.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYdEy5JAQy-YS7CaH_7mEos7yEsTTEMmlVELH-Yni726cdux6G6tUTB8yHLdCXYD6rh3crQq1iyc-MVj1EDLP73UsHOLA1N1vbnSR1_3kyiC8p96t9hNmFAoZzLRMTAEDofYn2IjBoWHuM/s640/blogger-image-977534353.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0RL6GSKJit5AloRZrNNmlKPmTRJluXQVOiu3ecwNtqzrf7iF8QhF3zgb-sHppbLjNSTxg95vY88th3kTRaxtZ__cWamg4pZvDmBuVyJIASzfKWL9r3XCPIA5AfpsHFeIzodmlthSXsDAk/s640/blogger-image-377295289.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0RL6GSKJit5AloRZrNNmlKPmTRJluXQVOiu3ecwNtqzrf7iF8QhF3zgb-sHppbLjNSTxg95vY88th3kTRaxtZ__cWamg4pZvDmBuVyJIASzfKWL9r3XCPIA5AfpsHFeIzodmlthSXsDAk/s640/blogger-image-377295289.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We are so blessed to celebrate another birthday with Emma. I challenge all of my mom friends out there to not be sad about milestones and birthdays. So many of my friends in the heart community would give almost anything to be able to celebrate another milestone or birthday with their little one. For this reason and many many more, we are joyful for each milestone and birthday that we get to experience with our little sunshine.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">October brought about many more fun activities as well. We had or annual Mended Little Hearts of Dallas pumpkin patch event. It was an unseasonably warm day, so Emma wasn't quite content with being out for the event in the hot sun. But it was a great turnout and we enjoyed continuing to support and encourage heart families in the DFW area.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigrGQqtP12K1Iwugt8hyyusH1_RkKVL9t3aGLwsDFwsnZ0EyXrw89C0xmf_8roPDsjKvNbH8am9A_2Iu_FkdlzEFVOhsi3zjHqS6cXSexvl8OuSJ2BHsquxv4YR1UnDgJo7i7rKx60L1kr/s640/blogger-image-1931750302.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigrGQqtP12K1Iwugt8hyyusH1_RkKVL9t3aGLwsDFwsnZ0EyXrw89C0xmf_8roPDsjKvNbH8am9A_2Iu_FkdlzEFVOhsi3zjHqS6cXSexvl8OuSJ2BHsquxv4YR1UnDgJo7i7rKx60L1kr/s640/blogger-image-1931750302.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgsREpKWw96goMNXqtYIurfyB5GG4qeVlJKDCzYpRrkgOobKqn9G0tVsaCXu0FwaJv0X7Qo6NHGKku1HeCTQTJTyjq58bzTfWcFLAgyMrD0iLlO1I4TLhe4lfH42nD3RxkXlxgG2qQrIG0/s640/blogger-image-1688548211.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgsREpKWw96goMNXqtYIurfyB5GG4qeVlJKDCzYpRrkgOobKqn9G0tVsaCXu0FwaJv0X7Qo6NHGKku1HeCTQTJTyjq58bzTfWcFLAgyMrD0iLlO1I4TLhe4lfH42nD3RxkXlxgG2qQrIG0/s640/blogger-image-1688548211.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY4RtJ2fOY9ctAyKQVhohhIfTIa_liYwvD9EifSGUBwquqQJRX1SgJiWVngfy9cNixvk8IeDOlpL0QGUC1Q4gO7Ck97kOyzzTUnjRnr7DeoP-mUgJEuQHhu7MlUGhJxGnbYGbyrdqZZwfv/s640/blogger-image-828216287.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY4RtJ2fOY9ctAyKQVhohhIfTIa_liYwvD9EifSGUBwquqQJRX1SgJiWVngfy9cNixvk8IeDOlpL0QGUC1Q4gO7Ck97kOyzzTUnjRnr7DeoP-mUgJEuQHhu7MlUGhJxGnbYGbyrdqZZwfv/s640/blogger-image-828216287.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We also took a much-needed family vacation. We took our camper to Lake Texoma for a week. Gramma and Grampa took their trailer as well and we enjoyed a relaxing vacation in the summer-like temperatures. Grampa, Gramma, and I all got to waterski on a 90 degree October day. We went on boat rides, attempted to go fishing, took walks around the park, watched Max and Gramp play with the remote control boat, had friends come down and play one day, and just enjoyed being together.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh40FmmImfVcd10IIMGEX9J3O-S6GokDWo4tHMB4DXsI3P4k7Z8yt2KRcffJTRG3KWgXcOCFN-HLkGigLwCSoKgzZdMimmD6mLgoQP-IROJwWUPHZIXvfl0c5vz8fmbkWmjMLja5lMyuS4A/s640/blogger-image-545855527.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh40FmmImfVcd10IIMGEX9J3O-S6GokDWo4tHMB4DXsI3P4k7Z8yt2KRcffJTRG3KWgXcOCFN-HLkGigLwCSoKgzZdMimmD6mLgoQP-IROJwWUPHZIXvfl0c5vz8fmbkWmjMLja5lMyuS4A/s640/blogger-image-545855527.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWQVZFWbSUPhAaxWQocnPcujZvyRzQ8XVAGYttUJLIZebYDwHTZ8x8rA6Y-nQnX928iezZCPM5fy2Gyao6-QBZRrM-wv3sLwMZqGFORLyaeWek3DVQ9dVWOF0zZW93-ZnU9WGmu2XOEXqt/s640/blogger-image--1149393466.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWQVZFWbSUPhAaxWQocnPcujZvyRzQ8XVAGYttUJLIZebYDwHTZ8x8rA6Y-nQnX928iezZCPM5fy2Gyao6-QBZRrM-wv3sLwMZqGFORLyaeWek3DVQ9dVWOF0zZW93-ZnU9WGmu2XOEXqt/s640/blogger-image--1149393466.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9_TpkDHnAAiLmjcS4SLkyc5yUl7wIS_e0AsjNGr4Jj3EsQOLRrdJAPDKi6KHSAqLMVsoFnLwmhxEWr_A8KklvdgchDbvZ3KrMAz3Rfm3yqWLD0tiGqTbgn7V_aP7aQsjBVDbRbvTnOKQO/s640/blogger-image--613829576.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9_TpkDHnAAiLmjcS4SLkyc5yUl7wIS_e0AsjNGr4Jj3EsQOLRrdJAPDKi6KHSAqLMVsoFnLwmhxEWr_A8KklvdgchDbvZ3KrMAz3Rfm3yqWLD0tiGqTbgn7V_aP7aQsjBVDbRbvTnOKQO/s640/blogger-image--613829576.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkev6yuN9ISfGRsNZ3-HNEB1JQ71puLCrZgHh4JFV1Or-DqFeRoiBKw4GA0CJGj3LtOCmGPfR8IZgCvO3MBhIrkcAXy1fRCDYNceiHmSJ0IyK0PCXKMC0tI4ory1u7wuSRRe5mOtOdGvOY/s640/blogger-image-628344836.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkev6yuN9ISfGRsNZ3-HNEB1JQ71puLCrZgHh4JFV1Or-DqFeRoiBKw4GA0CJGj3LtOCmGPfR8IZgCvO3MBhIrkcAXy1fRCDYNceiHmSJ0IyK0PCXKMC0tI4ory1u7wuSRRe5mOtOdGvOY/s640/blogger-image-628344836.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Emma also got to choose what she wanted to dress up as for Halloween. She decided she wanted to be a monkey and she wanted Max to be an alligator. Halloween is also daddy's birthday, so we enjoyed celebrating Scott's birthday when he got back from a business trip that day. Emma really second-guessed her choice of being a monkey because she hated having to wear the head piece. Check out the hilarious the tips for pictures with these two crazy zoo animals.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUkcZXHqqcD9ybGBPkE-LkH973MirIPl3_ZqIU9jseqpeDfYFeWGVD8RD1EnGq5yvP_1IPcPdcGSVKRQ1tK8ZDxuGPoOoukJmv-NhqQp3WzhQtCIrGProsIc6pZtmdjlzvv4B8uiz9JJ0n/s640/blogger-image--1915299962.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUkcZXHqqcD9ybGBPkE-LkH973MirIPl3_ZqIU9jseqpeDfYFeWGVD8RD1EnGq5yvP_1IPcPdcGSVKRQ1tK8ZDxuGPoOoukJmv-NhqQp3WzhQtCIrGProsIc6pZtmdjlzvv4B8uiz9JJ0n/s640/blogger-image--1915299962.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhByckNjBUyo7L_wzTFzJquMs7D__P_PT8ePxOzC-7qgw2BOZxUDYZuTqPaM1yElxZF_qaMTcCkMBYAQX_yXc1Iz3PADiE-WJpK4ApjEbiepg5Wo_0okqVh3Yh-RLnyNDXkd3s-LDGx_zsd/s640/blogger-image-528754830.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhByckNjBUyo7L_wzTFzJquMs7D__P_PT8ePxOzC-7qgw2BOZxUDYZuTqPaM1yElxZF_qaMTcCkMBYAQX_yXc1Iz3PADiE-WJpK4ApjEbiepg5Wo_0okqVh3Yh-RLnyNDXkd3s-LDGx_zsd/s640/blogger-image-528754830.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg30BOe5XUEBVuYt5T54O368qhL8mK5zzas3p1rJ7WrHM1HZpeFDV63kAFHeX6fpCIwpIe-7PG5hF2qDIVnUStfvsK3ta7cmamv2W9cFPM5N1X9M0cWVBd5oZgRFyeYY8KtcZRl5Y6guSsa/s640/blogger-image--1366331955.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg30BOe5XUEBVuYt5T54O368qhL8mK5zzas3p1rJ7WrHM1HZpeFDV63kAFHeX6fpCIwpIe-7PG5hF2qDIVnUStfvsK3ta7cmamv2W9cFPM5N1X9M0cWVBd5oZgRFyeYY8KtcZRl5Y6guSsa/s640/blogger-image--1366331955.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">November has been pretty busy yet normal for us. I'll detail how our week typically goes. On Monday and Wednesday she sees physical therapy, homebound school, and speech therapy. On Tuesdays and Thursdays, she has school with mommy and Lorelei and occupational therapy. Fridays are typically an early morning cardiology appointment to check labs and change her PICC line dressing in cap.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqaqiMLezfJ_p4-hFN001M4ARawvuKXe3FFowCQDdgaU4-w0uW0Kionh__8V1wqd9Ys2KlZYjPtkCvIP2Pu1Vvq2rqzrnIwXkY16ui19d6w3z4oXtp8CdTvTJXs4CBjxrcLI5xpx_DRRDP/s640/blogger-image-1120490922.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqaqiMLezfJ_p4-hFN001M4ARawvuKXe3FFowCQDdgaU4-w0uW0Kionh__8V1wqd9Ys2KlZYjPtkCvIP2Pu1Vvq2rqzrnIwXkY16ui19d6w3z4oXtp8CdTvTJXs4CBjxrcLI5xpx_DRRDP/s640/blogger-image-1120490922.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik6X_mk-RvLhMVLLpO6QM7QPG3W_CFC9rvPShCB1EA98-E2Owy0jEoFFKjUqdWDxt4x_evYJ2AflN-xvu-aEdQHRiSC7l-o8D53NygDkSbqtlIDhJnKqqYEHkNEXJ9JSFhwk_x5TstjoAI/s640/blogger-image-840636910.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik6X_mk-RvLhMVLLpO6QM7QPG3W_CFC9rvPShCB1EA98-E2Owy0jEoFFKjUqdWDxt4x_evYJ2AflN-xvu-aEdQHRiSC7l-o8D53NygDkSbqtlIDhJnKqqYEHkNEXJ9JSFhwk_x5TstjoAI/s640/blogger-image-840636910.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiDq2bJeWSKeIBF7R6v7YL1mm-k4ZYj-7GjPUE-OzCpgy8vVeUClLeVqVpOz29yvgcCgFPPgTf_yWbumzSDj2dPq-0XR1yWK2qdYIOKcrLhwJv4QnibP51YLWV9z7zPwGD47vozRJ3I6h0/s640/blogger-image--495735012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiDq2bJeWSKeIBF7R6v7YL1mm-k4ZYj-7GjPUE-OzCpgy8vVeUClLeVqVpOz29yvgcCgFPPgTf_yWbumzSDj2dPq-0XR1yWK2qdYIOKcrLhwJv4QnibP51YLWV9z7zPwGD47vozRJ3I6h0/s640/blogger-image--495735012.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheIrdRWIJjonuGzTLo-s1AbQcfXj2dc9qVHrDC0DoshwH_ty1yXCg2V11D19T6P6eF4K42xaC1T5wYTBtb1klP5L97x2u9ZKqrbCDSs6-eI1BLiVtc09-szRU8jrqfUvXjcpTOqPomRiKy/s640/blogger-image-83902769.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheIrdRWIJjonuGzTLo-s1AbQcfXj2dc9qVHrDC0DoshwH_ty1yXCg2V11D19T6P6eF4K42xaC1T5wYTBtb1klP5L97x2u9ZKqrbCDSs6-eI1BLiVtc09-szRU8jrqfUvXjcpTOqPomRiKy/s640/blogger-image-83902769.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We traveled to Oklahoma for Thanksgiving. We spent some time with my Gerth grandparents and Scott's side of the family. We enjoyed some yummy breakfast made by my MawMaw and delicious lunch made by my mother-in-law and sister-in-law. It was a short but sweet trip and we loved spending time with family.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz0R-_GsqUbn-twlgPBXcqkXn2iz6uGC6n1IGIfSyO7te5ozVMhcsYDEULJX0zQLxUO9R39Yqxeh90f2LPC2JjaME0aoVO2zCrlU0Mp2YZt6Zpe5DU6fv9JIsGKcU4eMMN759IQUSLA2VH/s640/blogger-image-307417359.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz0R-_GsqUbn-twlgPBXcqkXn2iz6uGC6n1IGIfSyO7te5ozVMhcsYDEULJX0zQLxUO9R39Yqxeh90f2LPC2JjaME0aoVO2zCrlU0Mp2YZt6Zpe5DU6fv9JIsGKcU4eMMN759IQUSLA2VH/s640/blogger-image-307417359.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5RpM3eliIGLKm1zWsqsLvGLhc2FxPcvu0WiNimEhReFdpYbVoo1I4-j3e_7DrBONfOzlUJtHlGUYfXuRfGMFNCXSCFEC6JyH3Gm6x25yWHkUk3N3MIw-nSlw6pU6uwosCz0r_9BszTOxw/s640/blogger-image--1946138880.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5RpM3eliIGLKm1zWsqsLvGLhc2FxPcvu0WiNimEhReFdpYbVoo1I4-j3e_7DrBONfOzlUJtHlGUYfXuRfGMFNCXSCFEC6JyH3Gm6x25yWHkUk3N3MIw-nSlw6pU6uwosCz0r_9BszTOxw/s640/blogger-image--1946138880.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So what have Scott and I've been up to? I have been diligently working on my dissertation. I got some news at the beginning of this Fall semester that has really lit a fire under me to get my dissertation done by the end of the spring or beginning of the summer semester. So, I am spending a lot of my extra time and late nights working on analyzing data and writing my last two chapters. I am also continuing with my volunteer position with Mended Little Hearts to Dallas. This is something that I really enjoy doing. I've always hoped and prayed that my experience with Emma can make a difference. Speaking of Mended Little Hearts of Dallas, during this time of the year when we're looking to fill our stockings and trees with presents. I come to you and ask that if you're looking for a way to give back to some families that may be spending their Christmas in the hospital consider visiting dallas.mendedlittlehearts.net and donate via PayPal so that we can provide comfort and care items to these families while they're in the hospital.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Scott has been very busy with work. October had him going to Washington DC and Las Vegas. November has seen an increase in nursing home facilities in the state of Texas, so he has been busy getting those implemented. Scott has also volunteered as one of our Bible class leaders, co leader for our life group, and is working with the Thrive campaign at our congregation to help provide food to those in Low socioeconomic locations in McKinney. I am so proud of how hard he works for us and those in the community.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEije93b_nS2tyM8tJdZSmS0hpv5e2sXEKP7GEr3oAiwZOUJiRPrR5kwN3teqNvQFNVl9NN4umormn_Sx78yZEMAJGdLoY_xYwzKHn7Gu1FWRxVu25b8rtzelvn72oNgwyuiUS6vUmnSRvpn/s640/blogger-image--1196175789.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEije93b_nS2tyM8tJdZSmS0hpv5e2sXEKP7GEr3oAiwZOUJiRPrR5kwN3teqNvQFNVl9NN4umormn_Sx78yZEMAJGdLoY_xYwzKHn7Gu1FWRxVu25b8rtzelvn72oNgwyuiUS6vUmnSRvpn/s640/blogger-image--1196175789.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoOxuzO02n1-GrP1FsQfA3dn-_7Hlo0cNA9pxJtOrSTbIMkv-NFnmQH8g4WKjLJp80C8sAY4XRhpRrOKTf8iaYNzZavtT3L6H10oF10p8-f-AKBrcb4DYJZZn3nnPP6Q3mDRnE2vqZ4QmJ/s640/blogger-image--1997613275.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoOxuzO02n1-GrP1FsQfA3dn-_7Hlo0cNA9pxJtOrSTbIMkv-NFnmQH8g4WKjLJp80C8sAY4XRhpRrOKTf8iaYNzZavtT3L6H10oF10p8-f-AKBrcb4DYJZZn3nnPP6Q3mDRnE2vqZ4QmJ/s640/blogger-image--1997613275.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwQQuA13atesNEatNkYRynWxjmOiNTXnbhJ-PPO1ajD3nw8va7jMcFAKCA6XkiwZWi2gJcYtdciL4XbS7ZdqDHxXSjJfLzZmBuujnGcBOzKlpoMoxFvv4B9xcVvaREQ4BZLDdnnxBFDhH/s640/blogger-image-1510512247.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwQQuA13atesNEatNkYRynWxjmOiNTXnbhJ-PPO1ajD3nw8va7jMcFAKCA6XkiwZWi2gJcYtdciL4XbS7ZdqDHxXSjJfLzZmBuujnGcBOzKlpoMoxFvv4B9xcVvaREQ4BZLDdnnxBFDhH/s640/blogger-image-1510512247.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimXsWzWKqddOAclDNEog6VFoOelbBJXFJ_sYbcocduj_EKSqxEfDLS2VKNvT9pNhmEdXwHniI4jlB3WQXniNVjMT5jD4ANA9ZCyj9rL0-MY7OEl5_ts5gGg1RlTeuBsCWxeHgTGyf551Ds/s640/blogger-image--834872458.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimXsWzWKqddOAclDNEog6VFoOelbBJXFJ_sYbcocduj_EKSqxEfDLS2VKNvT9pNhmEdXwHniI4jlB3WQXniNVjMT5jD4ANA9ZCyj9rL0-MY7OEl5_ts5gGg1RlTeuBsCWxeHgTGyf551Ds/s640/blogger-image--834872458.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAYuOXOMJ4lnwECFoHdEW-TZHBNRxUIvGnhoZCvvAtEohrz6EOuGJgpR_BFYPzvsI9PmT_BuhKG92d6T6oppTTQwMppdhsVilAWftctUE3bQdLWe6XQoVl4PEW4MbCSLQ6XccmyZKpck9m/s640/blogger-image--2024035061.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAYuOXOMJ4lnwECFoHdEW-TZHBNRxUIvGnhoZCvvAtEohrz6EOuGJgpR_BFYPzvsI9PmT_BuhKG92d6T6oppTTQwMppdhsVilAWftctUE3bQdLWe6XQoVl4PEW4MbCSLQ6XccmyZKpck9m/s640/blogger-image--2024035061.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">As you can see, we have been a very busy family over the last few months. It is a good busy, it is back to some sort of sense of normal. Don't get me wrong, there is always her heart failure. It affects us on a daily basis. Her body does not have normal stamina, and there are days when she is completely worn out; however, her endurance and will to keep living inspires me daily. Speaking of will, this kid is one hard headed/stubborn little girl. Please don't ask me where she gets it from LOL. Emma has decided that she's just not going to participate in activities. One day she had to go to timeout five times in the period of an hour for not finding five things in her sensory tub. It is not uncommon for this little one to get multiple things taken away from her on a daily basis. I love her fight but she knows better and has to learn how to obey as well. She keeps us on our toes for sure. We are looking forward to the holiday season. We have a lot of fun family activities and mommy school activities planned. Thank you for continuing to pray for our sweet girl. We cannot thank you enough for the love and encouragement. God is good! All the time! God is good!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfLIN1bBl9MKM94iv60fxAiyvbn34RsAZPJy8XIMxVu6K5nxVmT8jI2NR8fmr0-SE5-2UZ9bfHInm_jw5PMbQYEYKhJYvrwFzyhOE5IhlXVGJcCn6KU7oHkvX0fjqP929-Eq-QC5zOnNd1/s640/blogger-image-1876724423.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfLIN1bBl9MKM94iv60fxAiyvbn34RsAZPJy8XIMxVu6K5nxVmT8jI2NR8fmr0-SE5-2UZ9bfHInm_jw5PMbQYEYKhJYvrwFzyhOE5IhlXVGJcCn6KU7oHkvX0fjqP929-Eq-QC5zOnNd1/s640/blogger-image-1876724423.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEvNrxxmHog6-N1aFn7P1zQNB-z3CCrzr7JiHvBQry2MjgVDlx53lqnh0uSeKS4mzu0eS6oYM1ymdcRw4_gwsEK1Yn1w4JvSBrD6KITs1B4cYaDq-GMpKth2F2Ffr4WtpTADlTL4Z8nrlU/s640/blogger-image--1506758649.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEvNrxxmHog6-N1aFn7P1zQNB-z3CCrzr7JiHvBQry2MjgVDlx53lqnh0uSeKS4mzu0eS6oYM1ymdcRw4_gwsEK1Yn1w4JvSBrD6KITs1B4cYaDq-GMpKth2F2Ffr4WtpTADlTL4Z8nrlU/s640/blogger-image--1506758649.jpg"></a></div><br></div></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com1tag:blogger.com,1999:blog-4843526988083008045.post-46733653365973719712015-08-06T10:41:00.001-07:002015-08-06T13:10:04.208-07:00Finding Our NormalIt has been a few weeks since we've updated the blog so I thought I would give our loyal blog followers a brief update on Miss Emma. First and foremost, Emma is really enjoying being at home. It does our hearts good to see the joy on her face from doing normal run-of-the-mill activities that she has missed so much in the past seven months. <div><br></div><div>Therapies:</div><div>Emma has officially started physical therapy, occupational therapy, and speech therapy. She has thoroughly enjoyed getting to see each of her therapist that she is not been able to see in a long time. She is working very hard for each one of the ladies and they are very impressed with the progress they are already seeing. As we all know, Emma is constantly surprising us with her ability to reach beyond the limits that so many medical professionals put on her early on in life. </div><div><br></div><div>Physical Therapy: </div><div>The physical therapist is working with Emma to increase her stamina post op. She is also working on getting Emma to learn how to do transitions to get herself up and out of bed. Once her stamina improves for standing. We will begin working with Emma in her kid walk to get her to use to the walker in order to maneuver herself downstairs. Pic of Emma standing at window looking for flying pigs: 🐷</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUZkJMJG9qRoLt1Ioto7PrA5p0Nqp-Sr-GJTUbcAMzM_jdEyMid3qDHNdhAXw5FagLBNJhGesfZwdCO0oPr33rU_5KMYyIZrfkHuVQ6StUpUUwmNVmUvjNNGLMcD_17Kzoe6FOU76-wbQT/s640/blogger-image-743337473.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUZkJMJG9qRoLt1Ioto7PrA5p0Nqp-Sr-GJTUbcAMzM_jdEyMid3qDHNdhAXw5FagLBNJhGesfZwdCO0oPr33rU_5KMYyIZrfkHuVQ6StUpUUwmNVmUvjNNGLMcD_17Kzoe6FOU76-wbQT/s640/blogger-image-743337473.jpg"></a></div><br></div><div>Occupational Therapy:</div><div>The occupational therapist has been working primarily to get Emma to be not so sensitive to certain textures. After all the hospital stays and surgery Emma is having a difficult time handling different textures. Her sensory issues have progressively worsened;however, we have all been pleasantly surprised with her willingness to try new textures at home. So, this picture of Emma touching sand is a HUGE deal:</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjcfs6WfNDOk3SuXz76mlumnAcQ4m-STGwd7uJm0ov0ZzOhZynXyxcuDcYw7dJI-tcwh-tze1mkseUtG5figrawYB_80zPyeRu6BUgj7cSD1JT4wEBtdcgJVavwnva-IkIO6NWw4Iu1Ykf/s640/blogger-image-636657126.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjcfs6WfNDOk3SuXz76mlumnAcQ4m-STGwd7uJm0ov0ZzOhZynXyxcuDcYw7dJI-tcwh-tze1mkseUtG5figrawYB_80zPyeRu6BUgj7cSD1JT4wEBtdcgJVavwnva-IkIO6NWw4Iu1Ykf/s640/blogger-image-636657126.jpg"></a></div><br></div><div>Speech Therapy:</div><div>In speech, we are working on teaching Emma how to use an augmentative device on an iPad to help further her communication needs. We are starting very basic, but she seems to be picking up on how to ask for things that she wants. You see, Emma has a huge understanding of the world around her, but cannot express her needs...imagine how frustrating that is for her. We are hoping this will open doors for her in the communication department. I don't have a picture of her using this, but she is always communicating through signs and drawings. She drew a picture for her friend Smith. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTLfSF73cfirwj4mooXuL29WSr3d7DyIy6SpaEeVeTceTE9DWidLwMIAtqfWoCYEcRC0YajnHm0OcY0GTjppxGF3XNUDp7Ema_AA4DZ35PZycCz8HuJ5O4VbIdtJjMhxWHHTkmBTpgK3Dq/s640/blogger-image-52766450.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTLfSF73cfirwj4mooXuL29WSr3d7DyIy6SpaEeVeTceTE9DWidLwMIAtqfWoCYEcRC0YajnHm0OcY0GTjppxGF3XNUDp7Ema_AA4DZ35PZycCz8HuJ5O4VbIdtJjMhxWHHTkmBTpgK3Dq/s640/blogger-image-52766450.jpg"></a></div><br></div><div><br></div><div><br></div><div>Medical Update:</div><div>Emma is still struggling quite a bit with fluid balance issues. We are getting labs at least twice a week to monitor her fluid balance. In true Emma fashion, when she looked her best, her numbers were not good. We had to back way off of her diuretics and increase her feeds in order to make her kidneys happier; however, this did not help her abdominal ascites at all. So, here we go again...increase diuretics and check labs on Friday. We know this will be an ongoing battle....but at least we're home. Her last echo was stable so we continue on....one day at a time. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVoVTwosQCYa9c72WSYGhhZqvLEv9_C_dNu1mRmgG4Vpm8ferydb8bE3hfaMDwCalMS0vq3kYtdacGXyxO0V1CMk-Hhcg_GpF3Huik6n05OFXytIZ_3HdWzKLMzIZuZruTvllfvlBPET4J/s640/blogger-image--1085900907.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVoVTwosQCYa9c72WSYGhhZqvLEv9_C_dNu1mRmgG4Vpm8ferydb8bE3hfaMDwCalMS0vq3kYtdacGXyxO0V1CMk-Hhcg_GpF3Huik6n05OFXytIZ_3HdWzKLMzIZuZruTvllfvlBPET4J/s640/blogger-image--1085900907.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifLBVqc0v-jDYN8OBI47VF_DB-G5pLEgGnNJhjcDHA4g2KkG9fECQCXhJU1LBNrSGD_EklB5S8mrGgi0bKTs8qGwwWVKuuRtsTjy9g1s80nB7yjchWjZW3HE5q1Qn8DvOaMvem9fW4A7nU/s640/blogger-image--326236917.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifLBVqc0v-jDYN8OBI47VF_DB-G5pLEgGnNJhjcDHA4g2KkG9fECQCXhJU1LBNrSGD_EklB5S8mrGgi0bKTs8qGwwWVKuuRtsTjy9g1s80nB7yjchWjZW3HE5q1Qn8DvOaMvem9fW4A7nU/s640/blogger-image--326236917.jpg"></a></div><br></div><div>Overall, we are loving the process of finding our normal again. We have found a couple of wonderful nurses who are helping us get back into a routine conducive of our crazy individual schedules. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpcndsKuQ0WCaaAyBLXtAxLMxyyfVlsWcfCJF3XuRZWexDhXkNBnS8kbyyFrzjQc_I-UGxo44i1dEYIlAN4UFQpy9Bx0ttVcQh7OOvUcILQkBoNCO4zHeE6cuHexstciRdiqohFRQijqaP/s640/blogger-image-66024248.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpcndsKuQ0WCaaAyBLXtAxLMxyyfVlsWcfCJF3XuRZWexDhXkNBnS8kbyyFrzjQc_I-UGxo44i1dEYIlAN4UFQpy9Bx0ttVcQh7OOvUcILQkBoNCO4zHeE6cuHexstciRdiqohFRQijqaP/s640/blogger-image-66024248.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxfBN3WJXOAeT09zAJG7lQPBdEBGaJRhVBTZrhFmOE7CpfKVmmwu-zjH-0pKA3vY2QtGiQqaKt4qWe5w3OVVbQwVxX_XcAKdduAizaOGccZE2r_CdefHDTGgrfLjsV9kxQqLsspTcJu9wo/s640/blogger-image--121166056.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxfBN3WJXOAeT09zAJG7lQPBdEBGaJRhVBTZrhFmOE7CpfKVmmwu-zjH-0pKA3vY2QtGiQqaKt4qWe5w3OVVbQwVxX_XcAKdduAizaOGccZE2r_CdefHDTGgrfLjsV9kxQqLsspTcJu9wo/s640/blogger-image--121166056.jpg"></a></div><br></div><div>God is good! All the time! God is good! God's goodness is not dependent on how smooth or fair our lives are. God is faithful....even during the storms...he is waiting....waiting on us to choose to either turn our backs or trust in his plan. Scott and I are choosing to trust...even when it is hard. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhakC_vqlDaj13SdNrpiI3mZJ9RHTxSU39r_Rq3Vur-FP2ElKYrDPJfsVMIrYtKqdV9eArLhq97TZdq9h3okYUArhwAyKX2gDUgHQjhqVvPR_9AYHMrKpOOVh02iTSP3dblSB56iykOUsmt/s640/blogger-image-1050825023.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhakC_vqlDaj13SdNrpiI3mZJ9RHTxSU39r_Rq3Vur-FP2ElKYrDPJfsVMIrYtKqdV9eArLhq97TZdq9h3okYUArhwAyKX2gDUgHQjhqVvPR_9AYHMrKpOOVh02iTSP3dblSB56iykOUsmt/s640/blogger-image-1050825023.jpg"></a></div></div><div class="separator" style="clear: both;">Once again, we can't thank you enough for the prayers, cards, encouragement, love, and support you all have shown us in so many ways.</div><div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com4tag:blogger.com,1999:blog-4843526988083008045.post-57739406655243986982015-07-13T14:49:00.001-07:002015-07-13T14:55:18.668-07:00A big catch up: HOME<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><br></div>Wow! It has been a whole month since I have updated the blog. Time flies when you're.....in the hospital. What to say to get you caught up? Basically, life has been a lot of the same old same all since we arrived from Boston. The biggest issues that we deal with are</span><span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress; -webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> fluid issues, feeding issues, abdominal girth issues, infection issues, electrolyte issues, and cardiac issues. No biggie right? It would seem like we were getting very close to gearing up to go home when of course there had to be something that prohibited that. This time the culprit at hand was C-Diff. If you don't know what C-diff is, I encourage you to Google it....or on the other hand,maybe not (ha ha)! Basically, C-Diff causes a lot of diarrhea that is very contagious. In a kiddo like Emma who has been on a long-term antibiotic course and is also taking PPI's including Prilosec and Zantac, C-Diff can be very difficult to eliminate.</span><span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"> When we started noticing the frequent diarrhea, we also noticed that her abdomen was distended and she seemed very uncomfortable. After the abdominal ultrasound showed minimal fluid, The team decided to send her stool to check for bacteria. At this time, Emma also started having issues tolerating her formula.</span><span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress; -webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> It wasn't that she was vomiting, or retching or gagging, but she was so uncomfortable that she would scream, refused to sleep, and was just overall very cranky. The team decided to run Pedialyte only and give her gut a little bit of a rest. At this time they also started an antibiotic to help with the infection. We slowly worked up on her freds and started her back on a more elemental formula to hopefully cause less stress on her G.I. tract. However, when we got back up to full feeds she started having the same issues again so we are now at three quarters strength feeds throughout the day and night of the elemental formula. However, she was still having frequent loose stools after the first 10 day course of antibiotics, so the team decided to to give her a very long tapered course of antibiotics to fully eliminate the bacteria. </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">I</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Since I wrote the above paragraph, (I have started and stopped this post multiple times) Emma has been able to come HOME!!!! Going home looks a little different this time. Going home includes more medications, more tubes, mines, and wires. None of that really matters though because it means that we can be home for the first time together in close to seven months. Yes, we had a few days at home in February but those were some very miserable days as Emma was very sick and did not feel well. we are anxious yet excited about this next step in our journey. We know that the likelihood of us returning back to the hospital is very large. We hope and pray they were able to stay Home for a while before we have to enter again. We are doing our best right now to get settled in at home, restart therapies and nursing, go to weekly cardio appointments, and overall getting our life organized. </span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Emma is still in heart failure, she is still dealing with some mild abdominal ascites, and is still being treated for C-diff; however, she is happy, active, and learning more and more every day. Scott and I are truly amazed by her tenacity. We are truly blessed to be able to be her parents even in the hard times. We continue to ask for your prayers as we walk this journey with her. we know that God has a plan for her life and we trust in that plan. As always, God is good! All the time! God is good!</span></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv4dCskiV5F6tW17hItXeJIg0QRVdlgL0nxQlr5EmstZpXAXA6pYQ4S_tQ4DzZt44zmWUNbGDIJI38KrFsdjZyop6cl04vQdAiW5q2y1E_FV43VYNhrM5Zn4sKAXLd74Odb-QyBS-VTgbh/s640/blogger-image-1540347536.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv4dCskiV5F6tW17hItXeJIg0QRVdlgL0nxQlr5EmstZpXAXA6pYQ4S_tQ4DzZt44zmWUNbGDIJI38KrFsdjZyop6cl04vQdAiW5q2y1E_FV43VYNhrM5Zn4sKAXLd74Odb-QyBS-VTgbh/s640/blogger-image-1540347536.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7YBYrR7IQlzLzlRYrm0IZyk9T07cDA0M9DAcP5kl5IzzJL19rCtBtzRBiGARDxeZyHXBcF4yCMmBHOQ-75Np9MfLJBT23z-L8pAiCZ4x6jEIgC8X2o6IaRl9g26QKLL6svnP_P2POAAgW/s640/blogger-image--1756842641.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7YBYrR7IQlzLzlRYrm0IZyk9T07cDA0M9DAcP5kl5IzzJL19rCtBtzRBiGARDxeZyHXBcF4yCMmBHOQ-75Np9MfLJBT23z-L8pAiCZ4x6jEIgC8X2o6IaRl9g26QKLL6svnP_P2POAAgW/s640/blogger-image--1756842641.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI7jYg6wc5z666z1HgEYtpfk9XNglasfScXY9RrCzQ9uhFAVu9_phcrQvzRZmT0XtmTf85wWCsjx0g5yzyq6GstTQbeN7S-3JpJfKqFRmV6xD8tDxdFIFjFs6QarswJ4MfV5RIWxLik21J/s640/blogger-image-1354792038.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI7jYg6wc5z666z1HgEYtpfk9XNglasfScXY9RrCzQ9uhFAVu9_phcrQvzRZmT0XtmTf85wWCsjx0g5yzyq6GstTQbeN7S-3JpJfKqFRmV6xD8tDxdFIFjFs6QarswJ4MfV5RIWxLik21J/s640/blogger-image-1354792038.jpg"></a></div><br></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com2tag:blogger.com,1999:blog-4843526988083008045.post-81459120347919090152015-06-05T15:13:00.001-07:002015-06-05T15:24:57.807-07:00Back in Dallas<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I apologize again for being delinquent in updating the blog. It has been a busy couple of weeks, so I will do my best to bring everyone up to speed.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Since it was decided that there are not any current surgical options for Emma, we all decided that it would be best for her to be brought back to Dallas so that she can be near family. Emma was medically transported back to Dallas on May 26. Since our arrival back in Dallas, we have been doing our best to get this team caught up on her last couple of months in Boston as well as to continue to manage her medical care.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">However, Emma decided to have other plans. She developed another peritoneal infection, so we had to remove her abdominal drain. Well, like the vicious cycle it is, Emma is accumulating fluid in her abdomen again. She had had fevers with this, but continues to act like she feels okay. The unfortunate thing is that we had to pull her abdominal drain due to the infection. Since then, Emma's abdomen keeps getting bigger and bigger. She will be getting some sort of drain soon. We are trying to work all of those details out right now. The main goals right now are to get her where she can be stable enough to go home.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Please pray that our big meeting next Tuesday goes well and we can develop a plan that works in the best interest of Emma. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Pray that her respiratory and peritoneal infection will go away. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">God is Good! All the time! God is good! Thank you for the continued prayers and support. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzCHP9ZGWpFhnNooja91Nxw6WEO2ijOLvh930hTSGbDPx4TsmHKK7Xa2neGVN-4wyDx70VDjL44FOCVVtKDA4LNmSXfkHXkeRSXf5oIsQbvYZboiaOLnGSPDax-vLl2GHyjUezH_0MqpU_/s640/blogger-image--1033448607.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzCHP9ZGWpFhnNooja91Nxw6WEO2ijOLvh930hTSGbDPx4TsmHKK7Xa2neGVN-4wyDx70VDjL44FOCVVtKDA4LNmSXfkHXkeRSXf5oIsQbvYZboiaOLnGSPDax-vLl2GHyjUezH_0MqpU_/s640/blogger-image--1033448607.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2jMJ_oglTNPr8_iOrhuiNSqXD2ZHCim3UlQamYFXlWiEVkfZSHQm-v47w9cD5_-vr1AVHqw5-CCuFVyqsN1sKqnv1BzgBrXkfBN9051M3cY-v40n7PVoWrT282F6_1GLcobdMwBZfZTzQ/s640/blogger-image--1863132283.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2jMJ_oglTNPr8_iOrhuiNSqXD2ZHCim3UlQamYFXlWiEVkfZSHQm-v47w9cD5_-vr1AVHqw5-CCuFVyqsN1sKqnv1BzgBrXkfBN9051M3cY-v40n7PVoWrT282F6_1GLcobdMwBZfZTzQ/s640/blogger-image--1863132283.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNfZsREQ7dwrLITTogJcqrGG0eQ2Qn6lxsTbQOWnGL9sDaFYKmAxQteWKlpsyaDqIA_q3qFPuC-fWJhDByISMzU2aeo4xF_opnqz5r-TRyTAodnWyMoseDdMPuP82HNAbjDzaTpuO93M7o/s640/blogger-image-91917247.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNfZsREQ7dwrLITTogJcqrGG0eQ2Qn6lxsTbQOWnGL9sDaFYKmAxQteWKlpsyaDqIA_q3qFPuC-fWJhDByISMzU2aeo4xF_opnqz5r-TRyTAodnWyMoseDdMPuP82HNAbjDzaTpuO93M7o/s640/blogger-image-91917247.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPvXJZKxSLGyUOvJ_Th7aMPMrfQhfC80eb7i5L48VvN5gs4hqE8Jzxhl46h0iaigFZdjwknfzEHu4DrM0HoR0ni-uPOdp5efsrJ01lzKLJP81zH4kBktICa6n0eFoHD7GuOA86UM9rqCKG/s640/blogger-image-1888275099.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPvXJZKxSLGyUOvJ_Th7aMPMrfQhfC80eb7i5L48VvN5gs4hqE8Jzxhl46h0iaigFZdjwknfzEHu4DrM0HoR0ni-uPOdp5efsrJ01lzKLJP81zH4kBktICa6n0eFoHD7GuOA86UM9rqCKG/s640/blogger-image-1888275099.jpg"></a></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com1tag:blogger.com,1999:blog-4843526988083008045.post-84386491924026239882015-05-18T20:38:00.001-07:002015-05-19T05:56:53.694-07:00Update 5/18/15Just wanted to put out a brief update on what is going on. Well to start, Emma is stable. We are doing medical management for her since right now we don't have any options for next steps. The team here is really pushing to get her back to Dallas for continued care and to transition to home. We thought this would occur early this week; however, with insurance being as lovely as it is, it is proving to be quite a challenge. We are awaiting more news on that. Other than that, we are just trying to maximize all of her medical care to give her the best quality of life possible. Please continue to keep us in your thoughts and prayers as we try to get all the transport info figured out, and as we get Emma in the best place possible for this to occur.<br>
<br>God is good! All the time! God is good!<div><br></div><div>P.S. Emma has developed a nasty cough that is causing her problems. Please pray that we can get this remedied soon. I hate seeing her miserable:(</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw9aBaIWebkbtcNMH2YCApwRRc7ScCbqENLuCVXA0IToClWpDnqX-8VfjU083NIW1UJpV5wtXq9sX3VFR6NeItot7DWzTzuZcVygtBX6l4AXCPYQ4vNFr0j8TkVUfVqa7aFrQ-93B-YkU2/s640/blogger-image-700686072.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw9aBaIWebkbtcNMH2YCApwRRc7ScCbqENLuCVXA0IToClWpDnqX-8VfjU083NIW1UJpV5wtXq9sX3VFR6NeItot7DWzTzuZcVygtBX6l4AXCPYQ4vNFr0j8TkVUfVqa7aFrQ-93B-YkU2/s640/blogger-image-700686072.jpg"></a></div><br><br>
-Scott</div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-42303981471418787142015-05-11T20:28:00.003-07:002015-05-12T14:03:27.748-07:00A Day in the LifeMy dear friend Sarah has been in Boston for the past week keeping me company and helping me with the day-to-day tasks. I asked her to do me a favor one day. I asked Sarah to document what I do in a 24 hour period with Emma in the hospital. You see, I get asked, rather frequently, what I do to occupy my time in the hospital....so....here is pictorial/brief description of what Emma's day looks like.<br>
<br><br>
12:04am: Beeping medicine pumps. I hate the beeping pumps. Now Emma is awake and can't get settled.<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJAV96q-wXBHtk2_x9BRmm8YYAgX8S_wpCOA9Nm9Na2Jng-NFIukyrQxTWty5CVoqF8jWVZgXhRwBjaGypUalU6XUEfUkBlmesKLrW0CFc_P4383_Zr_N0vOGaJ9IVKWGglUyRx2Zn3wkb/s640/blogger-image--1083574047.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJAV96q-wXBHtk2_x9BRmm8YYAgX8S_wpCOA9Nm9Na2Jng-NFIukyrQxTWty5CVoqF8jWVZgXhRwBjaGypUalU6XUEfUkBlmesKLrW0CFc_P4383_Zr_N0vOGaJ9IVKWGglUyRx2Zn3wkb/s640/blogger-image--1083574047.jpg"></a></div><br><br>
2:45am: Feeding pump is beeping which wakes Emma up again.<br>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOjp-IxhzNTX_WFAxKQd6_9GKZjRDsMkG5EgVoaL0fSAXPg3eWmtk9QvraJb24EAxus_LeKwBEetSB6GbZoUT5zDTEnIEhcaaKkgzpIkWIbtCJv8ek-iZcwXhLZeIu7Mc3FKe7jn3JDnvh/s640/blogger-image--183364569.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOjp-IxhzNTX_WFAxKQd6_9GKZjRDsMkG5EgVoaL0fSAXPg3eWmtk9QvraJb24EAxus_LeKwBEetSB6GbZoUT5zDTEnIEhcaaKkgzpIkWIbtCJv8ek-iZcwXhLZeIu7Mc3FKe7jn3JDnvh/s640/blogger-image--183364569.jpg"></a></div><br>
7:30am: Rise and Shine Boston. Emma is waking up and it is my turn to get ready for the busy day ahead.<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX77J2UkckFK9htjZDCTx_xhpPtdE87AArG4xSenVQ5Zh6c8ltvTQpr6jTfP_JbblHMMYCNKLPo4t_gknFS9DdUn38yaEL4DIhMS2rP5ZBh7FTEdbunIU9e89zJ70Kk1XNAsfXV_7LP10z/s640/blogger-image-1656244363.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX77J2UkckFK9htjZDCTx_xhpPtdE87AArG4xSenVQ5Zh6c8ltvTQpr6jTfP_JbblHMMYCNKLPo4t_gknFS9DdUn38yaEL4DIhMS2rP5ZBh7FTEdbunIU9e89zJ70Kk1XNAsfXV_7LP10z/s640/blogger-image-1656244363.jpg"></a></div><div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN_YuOM6Fe3PG7awJFfmCR95gjzyFI4ZvWsd3zXZ9YCsD4_S-kBQcN_OOtxtS26XixVsQ8D7n2N5eO6Ex2ALV3JOKYl4iT0xJ9vWKMAS_c67ytKhM4sbHalA5tScJzQ2s8JzB6TfzqS3n3/s640/blogger-image--2126336529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN_YuOM6Fe3PG7awJFfmCR95gjzyFI4ZvWsd3zXZ9YCsD4_S-kBQcN_OOtxtS26XixVsQ8D7n2N5eO6Ex2ALV3JOKYl4iT0xJ9vWKMAS_c67ytKhM4sbHalA5tScJzQ2s8JzB6TfzqS3n3/s640/blogger-image--2126336529.jpg"></a></div><br><br>
8:05am: Sarah arrived with coffee<br>
<br><br>
8:15am: Doctor rounds with around 15 different medical professionals<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4AOiEklTT7_NzHi_Xj04XHY-FiJOfL2Dpy0rd5vhcieFB56D-NRQVCHa4k-3hDKFgo6YJfEss6CvQrFuH0PPTD-QPkUIsjqOA6IPzhaRlRFeiZRPKDmQpEpE1Aj1kobH-mgaW7cqTxQX4/s640/blogger-image-1749742633.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4AOiEklTT7_NzHi_Xj04XHY-FiJOfL2Dpy0rd5vhcieFB56D-NRQVCHa4k-3hDKFgo6YJfEss6CvQrFuH0PPTD-QPkUIsjqOA6IPzhaRlRFeiZRPKDmQpEpE1Aj1kobH-mgaW7cqTxQX4/s640/blogger-image-1749742633.jpg"></a></div><br><br>
8:40am: 6 doctors come in room to examine Emma<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfYsFej7IPDgirNdIp9wwU-GCtKF9pqYeZCxAppOuIpgsHEQ1pYL1hSCkLOAFj6_EC5RKPL0KDaUMIhyphenhyphenBGwG0cNPKkqf-3FsWnl1CbizGanduLOBsUvS0TgLYSF4QVHgfZ71z5ecUGT2kT/s640/blogger-image--1849267388.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfYsFej7IPDgirNdIp9wwU-GCtKF9pqYeZCxAppOuIpgsHEQ1pYL1hSCkLOAFj6_EC5RKPL0KDaUMIhyphenhyphenBGwG0cNPKkqf-3FsWnl1CbizGanduLOBsUvS0TgLYSF4QVHgfZ71z5ecUGT2kT/s640/blogger-image--1849267388.jpg"></a></div><br><br>
8:45am: I finally get to drink my coffee ;)<br>
<br><br>
8:46am: Just kidding about the coffee....3 nurses enter room to flush Emma's PD drain and change PICC and PD dressing.<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAdtB1t-929PXnVibsHc8AjT7cqES81KM57TlbkRTVO2z1Ww-DteGqZECFWLJ71WvsZypCsx6f3VavetIzqa6E_tbafSBIp-wmLrRDI2-mVOQtghBuEuza6csqFOrVsCDPImQrI9CDa9Fq/s640/blogger-image--1631572191.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAdtB1t-929PXnVibsHc8AjT7cqES81KM57TlbkRTVO2z1Ww-DteGqZECFWLJ71WvsZypCsx6f3VavetIzqa6E_tbafSBIp-wmLrRDI2-mVOQtghBuEuza6csqFOrVsCDPImQrI9CDa9Fq/s640/blogger-image--1631572191.jpg"></a></div><br><br>
9:07am: Diaper change/weigh diaper<br>
<br><br>
9:13am: Begin administering 11 medications<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaTgLbjS0A8tDlDBTSmyUXAt0Z-ywmFXGpT4zwCVBDsagooN7QwdKTVgi66pce1TJq9Uu5jELEfhZUz5fmfzUpcUyDS1ZWZWqUYwkBw_acpkRF8hITW0yO11ctfLhQk2xSwlynqueoPAwF/s640/blogger-image-423979115.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaTgLbjS0A8tDlDBTSmyUXAt0Z-ywmFXGpT4zwCVBDsagooN7QwdKTVgi66pce1TJq9Uu5jELEfhZUz5fmfzUpcUyDS1ZWZWqUYwkBw_acpkRF8hITW0yO11ctfLhQk2xSwlynqueoPAwF/s640/blogger-image-423979115.jpg"></a></div><br><br>
9:15am: Fondaparinux injection<br>
<br><br>
9:36am: Sarah microwaved my coffee ;)<br>
<br><br>
9:42am: Call from Scott....I updated him on the plans for the day<br>
<br><br>
9:51am: Skype with Grampa<br>
<br><br>
9:53am: Nurse refills formula bag and increases Emma's rate.<br>
<br><br>
9:57am: CODE BROWN: Change clothes and bed dressings.<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPuWjNhUcHCO_DTpwXojpzMK-Vv6qfdiNjQ-dEQWA2kTprT0yGWGF_WVaEJSqodlqaB3vag-NfItl3Q4hwF99SJug-xZgDxnYSVOf2jUezusOj0MWh5pKJcp_R1tXg5gb3PMFIFTkZ1jrG/s640/blogger-image-555670904.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPuWjNhUcHCO_DTpwXojpzMK-Vv6qfdiNjQ-dEQWA2kTprT0yGWGF_WVaEJSqodlqaB3vag-NfItl3Q4hwF99SJug-xZgDxnYSVOf2jUezusOj0MWh5pKJcp_R1tXg5gb3PMFIFTkZ1jrG/s640/blogger-image-555670904.jpg"></a></div><br><br>
10:08am: Dr. Marx (cardiologist) stops by for a visit and to check in <br>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZyqJ9Y0UDjDtRhkqoft1GHE3M5crkn50sKkiH8CPxZiIW1cujNHzo_cPpy1Vpyfhgf2XEeC0FCgkW98m_HDwfPODp6_fgamACNMr9-lHMiMtShSZwn6-FR7c64Puq5D0EXyL1hFnWLcdd/s640/blogger-image--1344791967.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZyqJ9Y0UDjDtRhkqoft1GHE3M5crkn50sKkiH8CPxZiIW1cujNHzo_cPpy1Vpyfhgf2XEeC0FCgkW98m_HDwfPODp6_fgamACNMr9-lHMiMtShSZwn6-FR7c64Puq5D0EXyL1hFnWLcdd/s640/blogger-image--1344791967.jpg"></a></div><br>
10:14am: Outfit #2 for the day <br>
<br><br>
10:15am: Finally time for my breakfast<br>
<br><br>
10:17am: Have nurse bring in and clean play mat for Emma's <br>
<br><br>
10:30am: Machines start beeping again!<br>
<br><br>
10:37am: Administer IV antibiotic<br>
<br><br>
10:42am: Physical Therapy: AFO (leg brace) lift is too tall, so we will have to get that assessed. Emma does tummy time for the first time in six months (since her open heart surgeries)<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUub5excMXjBZIo03atihJateLGtDHwMK8ox1R8Auu5qSr7aA5VifxzOOlK8xC2ns4Ulnj1fqTjrxSB4r4OeXnmyZVHslOhNMx82tqZPfaCu5ROf_9ZJyChLimsAhQ5GC4_8gq4vc_Ae7a/s640/blogger-image--1740437605.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUub5excMXjBZIo03atihJateLGtDHwMK8ox1R8Auu5qSr7aA5VifxzOOlK8xC2ns4Ulnj1fqTjrxSB4r4OeXnmyZVHslOhNMx82tqZPfaCu5ROf_9ZJyChLimsAhQ5GC4_8gq4vc_Ae7a/s640/blogger-image--1740437605.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihD757UkHhxt0AMM8NspRQBzXdZitKfXGl3XuUxA_Chf6LDq1R__rNFxDG7fHVFEcqmjs5a4mn5LHCZo3kqH2ahrbNonXoxnjnJEqoUh5clRF4KjIZQLrU_4mwus3_sbIjiwa_xr-ns9Bn/s640/blogger-image--1551146764.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihD757UkHhxt0AMM8NspRQBzXdZitKfXGl3XuUxA_Chf6LDq1R__rNFxDG7fHVFEcqmjs5a4mn5LHCZo3kqH2ahrbNonXoxnjnJEqoUh5clRF4KjIZQLrU_4mwus3_sbIjiwa_xr-ns9Bn/s640/blogger-image--1551146764.jpg"></a></div><br>
11:20am: Meeting with nurses concerning a red area around Emma's PICC line.<br>
<br><br>
11:35am: ART Cart <br>
<div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8heSpEFBBpLJt_3YtSvG6JWDdpGMaeXUltEwvB4cXxpbO-DRQHRXlUTCTrR46FMAtuaJc_ynhcceInGZF1GcOlkfg5_koCJHluFTxgOw-0RhbkTjfUnKakslkxH-krSIjXbr5q_2xiTL0/s640/blogger-image--1459468305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8heSpEFBBpLJt_3YtSvG6JWDdpGMaeXUltEwvB4cXxpbO-DRQHRXlUTCTrR46FMAtuaJc_ynhcceInGZF1GcOlkfg5_koCJHluFTxgOw-0RhbkTjfUnKakslkxH-krSIjXbr5q_2xiTL0/s640/blogger-image--1459468305.jpg"></a></div><br></div><br><br>
12:04pm: Oral care <br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid-qlBKnhAU5OlRMNVJP0UAJYkI6zSlZOKBaL964F7YCwwiESqz4pkjqgdsa_i6tkDBg9InmraH4GfuZPKfs_wzOOkrmgaiMoulfp-2lRv6UVlbqA4n2CAJ7Kx3m9aI7cOiHJbFiurbEha/s640/blogger-image-673923185.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid-qlBKnhAU5OlRMNVJP0UAJYkI6zSlZOKBaL964F7YCwwiESqz4pkjqgdsa_i6tkDBg9InmraH4GfuZPKfs_wzOOkrmgaiMoulfp-2lRv6UVlbqA4n2CAJ7Kx3m9aI7cOiHJbFiurbEha/s640/blogger-image-673923185.jpg"></a></div><br><br>
12:12pm: Vented G-tube found pink feathers....hmmmm<br>
Changed diaper<br>
Measured abdominal girth<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHl-VHZjLbdVn7JE90bp4koXiavLlA8YRuocp8PzM_9wAPwC59GYeIMbOW4AWAZc3ABUIkb1dB4kCFIJuzPDXVkyO7C6KJgVeXr1XzkJhgrYtepnTFGZXWAfuKK3-yj7VsJBLEUqy3wdq9/s640/blogger-image-1164908798.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHl-VHZjLbdVn7JE90bp4koXiavLlA8YRuocp8PzM_9wAPwC59GYeIMbOW4AWAZc3ABUIkb1dB4kCFIJuzPDXVkyO7C6KJgVeXr1XzkJhgrYtepnTFGZXWAfuKK3-yj7VsJBLEUqy3wdq9/s640/blogger-image-1164908798.jpg"></a></div><br><br>
12:19pm: Nutritionist comes in and discusses that Emma is getting decent enough nutrition to turn off the lipids (fats that go straight into the veins)<br>
<br><br>
12:30pm: Moved Emma to treatment room to draw labs, change PICC line dressing, cap change, and turn off lipids <br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWXrvU2DmAH5ynZJBTWQScFJx9p0mHzmt5LXNqcAywo4BMAM4muJDWaLgvGKIKXxdc_qE0f37QrUhXYzMjZ2CK6kQnGciuneW2j6gRlgSdzh8r5MmjyOtj6cDy4lTkmJ7PL5XmLwT8bbOI/s640/blogger-image--599093352.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWXrvU2DmAH5ynZJBTWQScFJx9p0mHzmt5LXNqcAywo4BMAM4muJDWaLgvGKIKXxdc_qE0f37QrUhXYzMjZ2CK6kQnGciuneW2j6gRlgSdzh8r5MmjyOtj6cDy4lTkmJ7PL5XmLwT8bbOI/s640/blogger-image--599093352.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYGFmO6QENAAdzWG_3-U6Sfy3GxryrQEeIxA2sOoN6E2jwEEzId38fR_3oeAXS9B6Xz5-HrmhiTI1M_WDnOGR1aVf_ZUjLBAWMIIINXaqvCyL-uUqOO44W3PQXubgiw4uFPieRDyYLMPpO/s640/blogger-image-132797329.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYGFmO6QENAAdzWG_3-U6Sfy3GxryrQEeIxA2sOoN6E2jwEEzId38fR_3oeAXS9B6Xz5-HrmhiTI1M_WDnOGR1aVf_ZUjLBAWMIIINXaqvCyL-uUqOO44W3PQXubgiw4uFPieRDyYLMPpO/s640/blogger-image-132797329.jpg"></a></div><br>
1:13pm: Back in Emma's room<br>
<br><br>
1:20pm: Well deserved naptime for Miss Emma<br>
<br><br>
1:25pm: Make lunch and go to garden for lunch with Sarah<br>
<br><br>
2:40pm: Check on Miss Priss and change into running clothes<br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiriTwpYWhvKnDyxUbjTGisqCKOFQba9i6w2yO21KnZee0T939_2wm8ZFJhrer4zhS-_CjIZuWVXSBaLIAvoVQwAC8pnWY7FKYb2Ut81ImkK6jp8Bup9s1hD9RwpPHnX7vFBD6dVswKglpf/s640/blogger-image-876413924.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiriTwpYWhvKnDyxUbjTGisqCKOFQba9i6w2yO21KnZee0T939_2wm8ZFJhrer4zhS-_CjIZuWVXSBaLIAvoVQwAC8pnWY7FKYb2Ut81ImkK6jp8Bup9s1hD9RwpPHnX7vFBD6dVswKglpf/s640/blogger-image-876413924.jpg"></a></div><br><br>
3:20pm: Miss Priss wakes up from nap<br>
<br><br>
3:30pm: Child life specialist comes in to play with Emma<br>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsh1eK3QlqdHVlMJky_j3KHPMSPbMsP2d7yywM7tDSQGHa6sNnKM5L7ztrHiVHbETvrPra80gwt9D_IJx6C5Iir6o4JpwK2KOfQT2Vfx-TURrLU47R22X42ddJmkLgkfXRBleaNIuo7e2g/s640/blogger-image-469408432.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsh1eK3QlqdHVlMJky_j3KHPMSPbMsP2d7yywM7tDSQGHa6sNnKM5L7ztrHiVHbETvrPra80gwt9D_IJx6C5Iir6o4JpwK2KOfQT2Vfx-TURrLU47R22X42ddJmkLgkfXRBleaNIuo7e2g/s640/blogger-image-469408432.jpg"></a></div><br>
3:59pm: Put on AFOs<br><br>
<br>4:04pm: Nurse came in and administered meds.<div><br></div><div>4:13: Heart failure doctor visits</div><div><br></div><div>4:17pm: Code alarm sounds in another room. Doctors and nurses leave room in a hurry. Luckily, it was a false alarm.</div><div><br></div><div>4:30pm: Removed TPA from PICC line. Blood draw attempt was successful.</div><div><br></div><div>4:36pm: Antibiotic administered </div><div><br></div><div>5:17pm: Line and Cap change for PICC lines</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh506xCENBp1lruysZtOoHZvE0dCeh3_tIaRCzGgR5csS578wmHCr8ITDWanqViAKBiFmqGKpxdIbgUHqP-mrY8cC_j4zcgDGFcsgB0XX95LitrBIKvcZhyJhSgoFLZaQWmIU2KNdZzZV98/s640/blogger-image--1519955594.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh506xCENBp1lruysZtOoHZvE0dCeh3_tIaRCzGgR5csS578wmHCr8ITDWanqViAKBiFmqGKpxdIbgUHqP-mrY8cC_j4zcgDGFcsgB0XX95LitrBIKvcZhyJhSgoFLZaQWmIU2KNdZzZV98/s640/blogger-image--1519955594.jpg"></a></div><br></div><div>5:35pm: Emma in standing frame. I work with her on flash cards, block stacking, bubbles, ball throwing, and following directions. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO_be0lt7QbXEZd0Y3OWaOxhQq4wrNp57rDatCTFDEvFxJ0CrVvHMcmO6o63Ag5YzcSMZcY1anTLr711Bcab_8k3Oiim_VfvnTOvSM1sB6wOt5yHWI9dJRYpk19vjdkpE79gvLiOdJ3Tzw/s640/blogger-image-463569474.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO_be0lt7QbXEZd0Y3OWaOxhQq4wrNp57rDatCTFDEvFxJ0CrVvHMcmO6o63Ag5YzcSMZcY1anTLr711Bcab_8k3Oiim_VfvnTOvSM1sB6wOt5yHWI9dJRYpk19vjdkpE79gvLiOdJ3Tzw/s640/blogger-image-463569474.jpg"></a></div><br></div><div><br></div><div>6:25pm: Get Emma out of stander</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUqPiF0Ygo2vbAZ-p30o9UzKj-unCmV-0t0_MHmXJWDY1GI069XARp-0NkbnUIcp7Pg35mE78AoVdYg64_Y_pOiZDTND-ny35SH5D3iZhLJW9HuY3Pvg85UXsnsKmyQ3z0RZ6N1ZDfgG2M/s640/blogger-image--1424079259.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUqPiF0Ygo2vbAZ-p30o9UzKj-unCmV-0t0_MHmXJWDY1GI069XARp-0NkbnUIcp7Pg35mE78AoVdYg64_Y_pOiZDTND-ny35SH5D3iZhLJW9HuY3Pvg85UXsnsKmyQ3z0RZ6N1ZDfgG2M/s640/blogger-image--1424079259.jpg"></a></div><br></div><div>6:30pm: Sarah and I eat dinner in the room.</div><div><br></div><div>7:14pm: Start bathtime routine.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimc_vGTXP35NCHMCndngiRtxjVvg1qM2dGe5e1RQ2-uQVDo3jkTkNAdX-qUgbQJBLZDZh9MtgPu-k5N0P1LDwmbSBo9YjwnSJdwN59cyACl7OrRx0iJwve8q0VWRpPnMZrUsUP3aqeILAF/s640/blogger-image--1362228941.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimc_vGTXP35NCHMCndngiRtxjVvg1qM2dGe5e1RQ2-uQVDo3jkTkNAdX-qUgbQJBLZDZh9MtgPu-k5N0P1LDwmbSBo9YjwnSJdwN59cyACl7OrRx0iJwve8q0VWRpPnMZrUsUP3aqeILAF/s640/blogger-image--1362228941.jpg"></a></div><br></div><div>8:00pm: Get Emma's weight</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLnklX7woa-Rv_8P_z1L7aHah7fcJlnaTLm1_DILlsGyLHpT62fM-iTeSC2JPqeycnIG-IKz0Nu19o_VeI7wHCWvQHBsIBTS6G_7aCZvM-2kG_pwug82rveLaSnaQfA04rNwuQsEnY71lx/s640/blogger-image--1953969644.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLnklX7woa-Rv_8P_z1L7aHah7fcJlnaTLm1_DILlsGyLHpT62fM-iTeSC2JPqeycnIG-IKz0Nu19o_VeI7wHCWvQHBsIBTS6G_7aCZvM-2kG_pwug82rveLaSnaQfA04rNwuQsEnY71lx/s640/blogger-image--1953969644.jpg"></a></div><br></div><div>8:15pm: Breathing treatment </div><div><br></div><div>8:29pm: Skype with Grampa and Gramma</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc5Tdouge-9CAFy_YcKz1mYbCCKlXQbrs1z5QvQaKf7uY7mB8o_XbkMIay_9_5CAsYFk7BVpxKVs4MKkKALhqHX5HY_mmRozB_D9VnKmbhXD7sAmhho0L5HI6PfUMf3lffDyP9kD4rhirh/s640/blogger-image-90158293.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc5Tdouge-9CAFy_YcKz1mYbCCKlXQbrs1z5QvQaKf7uY7mB8o_XbkMIay_9_5CAsYFk7BVpxKVs4MKkKALhqHX5HY_mmRozB_D9VnKmbhXD7sAmhho0L5HI6PfUMf3lffDyP9kD4rhirh/s640/blogger-image-90158293.jpg"></a></div><br></div><div>9:00pm: Brush Teeth and administer night time meds</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Z820uh4hNYlf1XvCbtXgnAFHL4_yvFy9GaHr5zFVq4miin2OzSflouRmUKis6QAUXaZ7_r3SPUvebI4RuKD-DBPH9u-uJ5OXYFyq8-03E2x8TxRClrL1xt-Pnsa0bmCwxH9az1ugN_PG/s640/blogger-image-698521963.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Z820uh4hNYlf1XvCbtXgnAFHL4_yvFy9GaHr5zFVq4miin2OzSflouRmUKis6QAUXaZ7_r3SPUvebI4RuKD-DBPH9u-uJ5OXYFyq8-03E2x8TxRClrL1xt-Pnsa0bmCwxH9az1ugN_PG/s640/blogger-image-698521963.jpg"></a></div><br></div><div><br></div><div>9:05pm: Sing songs, read story, say prayers, bed</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6UwtXd0Uw5loKZxbdZsiXsGcNT3dzRqJDegLcnAUV_ah41cChl_ud8wvX0pFfM1EQ1qnqbxQs_79wVjb_IzvUVfdv5b1UpgfEObeF-GdjbYxHnDzT7zwAYapCYGFijUg5qx3-lewDalzZ/s640/blogger-image--1176020080.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6UwtXd0Uw5loKZxbdZsiXsGcNT3dzRqJDegLcnAUV_ah41cChl_ud8wvX0pFfM1EQ1qnqbxQs_79wVjb_IzvUVfdv5b1UpgfEObeF-GdjbYxHnDzT7zwAYapCYGFijUg5qx3-lewDalzZ/s640/blogger-image--1176020080.jpg"></a></div><br></div><div>10:33pm: I attempt sleep</div><div><br></div><div>12:15am: Emma stirs during assessment but goes to sleep without my intervention </div><div><br></div><div>3:12am: Emma wakes up crying..unsure why. I changed her diaper and vented her g-tube. She eventually went back to sleep.</div><div><br></div><div><br></div><div><br></div><div>So there you have it! 24 hours in the life of Emma in the hospital. Big thanks to Sarah for taking pics and documenting our day. </div><div><br></div><div>Emma is improving daily. She is officially off TPN and lipids and getting all of her formula through her g-tube into her stomach. Emma is off IV diuretics and getting oral diuretics to pull off excess fluid. </div><div><br></div><div>Tomorrow will be a big day because we will shut off one of the meds that helps support her cardiac output. The hope is that her body/heart can function decently without it. </div><div><br></div><div>One of Emma's other big issues is her PD drain. Emma is still putting out a decent amount out of her drain each day. We will need to try clamping it at some point.</div><div><br></div><div>Thank you for the continued prayers! We continue on this uncertain journey and try to get Emma back to some sort of normal in the meantime.</div><div><br></div><div>God is good! All the time! God is good! </div><div>
<br><br>
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm8-Yrt7aspe8Qt2oGfzUixUCg_kHlbPOSp3Ffq9kFQuAVEQRYqfJbbfMuVdWYT81Ro7ZfB4jxf8b32PVF2KysUc5uIuo_viffm4EZv-m0PB4Si6DIcKotIJtYK4EGv3HW3jNJa3trW1Ke/s640/blogger-image--414539311.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm8-Yrt7aspe8Qt2oGfzUixUCg_kHlbPOSp3Ffq9kFQuAVEQRYqfJbbfMuVdWYT81Ro7ZfB4jxf8b32PVF2KysUc5uIuo_viffm4EZv-m0PB4Si6DIcKotIJtYK4EGv3HW3jNJa3trW1Ke/s640/blogger-image--414539311.jpg"></a></div><br><br>
<br><br>
<br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com2tag:blogger.com,1999:blog-4843526988083008045.post-48210194983498033312015-05-02T19:41:00.001-07:002015-05-02T20:55:25.906-07:00Crossroads<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Where do I begin? And how do I adequately describe the crossroads at which we are currently at with Emma's care? </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Emma has always been seen as complicated and complex. I guess you could say that Scott and I have just learned to accept that....embrace it even....and work hard to try to find specialists to understand her unique anatomy and the way she responds to surgery, procedures, and medications. However, that doesn't make this process any easier. You see, we came to Boston to see the number one doctors in the world in the pediatric cardiology realm.....hoping that Emma wouldn't be quite such an anomaly. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The team here has work tirelessly to try to improve her cardiac function to give Emma the best chance possible with her current heart. What we have come to realize is that she is even stumping the best of the best. We hear day after day that the way Emma is responding to surgeries and medications are just so unique and even more so frustrating to the team. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">They care deeply about Emma just as her Dallas team did and it is extremely frustrating to them that they can't figure out how to improve the cardiac and pulmonary function. I told her cardiologist, here in Boston, that I felt like we were in a déjà vu nightmare. I said this because several years ago after her Glenn and Cath we were in the spot where Emma's body was rejecting the surgery and despite making obvious changes that should have made her heart better, Emma's body is rejecting the surgery again. Not only that, but for some reason her left lung is not getting much blood flow despite her left pulmonary artery and pulmonary veins looking fine. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So, where does that leave us. Well, right now Emma is not a surgical or transplant candidate. Her body has been through a lot over the past several months and there are several issues with her heart and lungs that are no where near being fully sorted out. Please understand that this in NO WAY means that the team or Scott and I are giving up on Emma. Everyone is hopeful that her body will recover and her heart will strengthen; however, we are all very realistic that her journey will continue to get harder and our options will come with more risk and less success. For instance, one of the only surgical options left to consider has only been done to around 20 kids...3 of those being successful. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">In the meantime, Scott and I focus on today. We focus on what we can do medically to bring Emma back to some sort of normalcy. Basically, getting Em back on feeds, enteral meds, stable kidneys, bone health, development issues, et . </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Please bear with us a navigate these stormy waters. Decisions Scott and I are making are not always favorable or easy. Know that we are doing a lot of praying and leaning on our Heavenly Father for support, wisdom, and guidance. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibzC4a5BxMQnICZUyDLrR_b7CqgdxAGilzVCQ6s39vUnuQL4OdCK018zmHhrB3wE0vCEaLCeZ_CgxdQf4P5hm8wTE85dCQixZLFwTLsO7obv3y1MQu7pbVRNlJVkgeJuIivYZqD76tPoTm/s640/blogger-image-1993130231.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibzC4a5BxMQnICZUyDLrR_b7CqgdxAGilzVCQ6s39vUnuQL4OdCK018zmHhrB3wE0vCEaLCeZ_CgxdQf4P5hm8wTE85dCQixZLFwTLsO7obv3y1MQu7pbVRNlJVkgeJuIivYZqD76tPoTm/s640/blogger-image-1993130231.jpg"></a></div><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">God is good! All the time! God is good! </div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com1tag:blogger.com,1999:blog-4843526988083008045.post-89677872845596886182015-04-29T05:48:00.001-07:002015-04-29T05:48:00.141-07:00Post Cath Update 2This will be brief....Emma had a rough night and is fighting very low blood pressures despite being on medications that help boost blood pressure. Emma is also running a fairly high fever that we are having problems bringing down. Also, Emma's belly has gotten huge...and of course we don't know why.<div><br></div><div>Today's plan is to take Emma to IR to attempt another PICC line and try to determine why her belly is so big.</div><div><br></div><div>Overall, it has been a very frustrating night. We hate that Emma has taken so many steps backwards. </div><div><br></div><div>Please pray:</div><div>1. Blood pressure will stabilize</div><div>2. Belly will decrease in size</div><div>3. A successful line will be placed</div><div><br></div><div>God is good! We don't always understand the plan, but HE is good! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPMmGy0B1Ifvccqs8P8k4U3puBjt9DONp-NtyYgwAnD827_49yvZrvTX9IIdT-5PuoaJ_32FuPSqzPv261c4RKjCtLBAxij03F_whEt2GJAj1TX3wr8pkB_gemVkS0dEDfH-MAZLQ6wzcE/s640/blogger-image--650025207.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPMmGy0B1Ifvccqs8P8k4U3puBjt9DONp-NtyYgwAnD827_49yvZrvTX9IIdT-5PuoaJ_32FuPSqzPv261c4RKjCtLBAxij03F_whEt2GJAj1TX3wr8pkB_gemVkS0dEDfH-MAZLQ6wzcE/s640/blogger-image--650025207.jpg"></a></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com2tag:blogger.com,1999:blog-4843526988083008045.post-53670564494320141822015-04-28T16:24:00.000-07:002015-04-28T16:24:35.531-07:00Post Cath UpdateThis is going to be a very brief update. Emma is stable after her cath procedure. She is still sedated and intubated (breathing tube still in). We have yet to hear what the plan is for the rest of this week or in the future. Right now, we ask everyone to continue to pray for her and us as we try to figure some things out. A more detailed update will come more than likely later in the week.<br />
<br />
God is good, all the time. And all the time, God is good.<br />
<br />
-ScottSarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-47457354376218290092015-04-28T11:33:00.001-07:002015-04-28T11:33:59.983-07:00Cath Update 2Emma is doing well and is stable in the cath lab. They are currently coiling collateral veins (veins that form to reroute blood to other places, often these are not good because it makes blood go away from the right paths).<div><br></div><div>The ENT scope did reveal that her left vocal cord is paralyzed. We will learn more about what this means for Emma later in the day.</div><div><br></div><div>God is good! All the time! God is good! Please continue lifting our girl up in prayer. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIw8VE-yEAb6WOP_UGBQORbkn6YNT74JNRb9IYohFVCw_PGo7DZxEGAvPgVe2MfbyGv4X39pF2uaT1poRmRsKZOZFuOokLfxCotiyh0H_LCnmTvO32Yf4wI5yAa7rxC-79MVO5cCxgJWn6/s640/blogger-image--1712817219.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIw8VE-yEAb6WOP_UGBQORbkn6YNT74JNRb9IYohFVCw_PGo7DZxEGAvPgVe2MfbyGv4X39pF2uaT1poRmRsKZOZFuOokLfxCotiyh0H_LCnmTvO32Yf4wI5yAa7rxC-79MVO5cCxgJWn6/s640/blogger-image--1712817219.jpg"></a></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-576564063794084882015-04-28T09:23:00.001-07:002015-04-28T09:23:24.065-07:00Cath update 1<div><br></div>They just took Emma back to the cath lab. They will do the ENT scope, cath, then place the PICC line. Thank you for the continued prayers.<div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib4QlTob2xVZRNPV7SU5Z_O8sDGUNkwcFnoSwqUYk6mUI5TlJoiBe11jpju3rtjybTI4axnJEC2wBYEBILQGMo_CxZ3dtH9rcse_FUhCZC97alcb3WKUy6dAUr4yLIL2uYDfs-bCpOiolv/s640/blogger-image-955588978.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib4QlTob2xVZRNPV7SU5Z_O8sDGUNkwcFnoSwqUYk6mUI5TlJoiBe11jpju3rtjybTI4axnJEC2wBYEBILQGMo_CxZ3dtH9rcse_FUhCZC97alcb3WKUy6dAUr4yLIL2uYDfs-bCpOiolv/s640/blogger-image-955588978.jpg"></a></div><br><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPomN5kr_UaFTuMaHd2GYtmUBmHtJEUbs6rISA-Dj2fVBKxwbcFbxdz4I93hmeu5dJRmj7Og2-Hd6NN-bPcKwf8lGyhavCezW7kXC8afIaCc6sFT84wlNdRHZjhqP4Ioax4p6UE1YSeP-Q/s640/blogger-image--826808685.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPomN5kr_UaFTuMaHd2GYtmUBmHtJEUbs6rISA-Dj2fVBKxwbcFbxdz4I93hmeu5dJRmj7Og2-Hd6NN-bPcKwf8lGyhavCezW7kXC8afIaCc6sFT84wlNdRHZjhqP4Ioax4p6UE1YSeP-Q/s640/blogger-image--826808685.jpg"></a></div><br></div></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-55120032941492032742015-04-27T19:09:00.001-07:002015-04-27T19:12:45.816-07:00Fork in the Road: Back to the Cath LabIt was a busy week for Miss Emma. The team has been working to try to optimize Emma's cardiac function while managing her fluid balance. This has proved to be a tedious task. Emma's kidneys are not really appreciating the medications (diuretics), so we can't pull off as much fluid as we would really like to pull off. The team also feels like we are at a fork in the road. We are guessing on certain numbers at this point, and those numbers really effect how we proceed and how we medically manage Emma in the interim. Therefore, the decision has been made to send Emma to the cath lab tomorrow. As of right now, Emma will be second case. Emma will also have a couple of other procedures done in the morning. The ENT staff will scope her to check her vocal cords since all of her intubations to make sure it is safe to try to let her eat. They will also be putting in a new PICC line because her old (that was placed in Dallas) started leaking today.<br>
<br><br>
So, tomorrow will be a big day for Miss Emma. It will also provide information that will help Emma's team, and us, make the best decisions moving forward. Thank you for the continued prayers as we move forward. We are obviously anxious for what information will tell us, but we know that God is in control and that he will lead us through this next storm. God is good! All the time! God is good!<div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNdAwgCtz3QWT69VYEZOKBUwqd-0P6HkTUUHF0vWl2VQp5Mi2KvVHHQ-ZNdXfxSAx6LJPH1rF6bNFAcvBdq1xyr4dNhHBbV27w8KdYWc5mREp5xUSaSIBSIodJ3yaHdq2xeVK0VpTqt0ef/s640/blogger-image--2041014407.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNdAwgCtz3QWT69VYEZOKBUwqd-0P6HkTUUHF0vWl2VQp5Mi2KvVHHQ-ZNdXfxSAx6LJPH1rF6bNFAcvBdq1xyr4dNhHBbV27w8KdYWc5mREp5xUSaSIBSIodJ3yaHdq2xeVK0VpTqt0ef/s640/blogger-image--2041014407.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKRvvP4gZIPVQPPbT-TRn9I4N147R2NGHx7Zku7Cffl9KIMsuOBsHDK2EpwqK8XhDVk1zwT4VxkUmbQZ09QMdh9kKs7vvWtdgxsMJ1wP-34PDc5Yd4pNCaFDdwn0wQv9jtCkRa333_T1YE/s640/blogger-image-178538938.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKRvvP4gZIPVQPPbT-TRn9I4N147R2NGHx7Zku7Cffl9KIMsuOBsHDK2EpwqK8XhDVk1zwT4VxkUmbQZ09QMdh9kKs7vvWtdgxsMJ1wP-34PDc5Yd4pNCaFDdwn0wQv9jtCkRa333_T1YE/s640/blogger-image-178538938.jpg"></a></div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_RsR2QjedHzD3tQ4CbHNkUTEYNv3K03dcqW14GUR31tnS2vz-23g8cbKwKBaSAKEvQVmPDFxEYjhWlaZZ9ofai3y3tjZYoaTzsSCMULWLLFjh0VTE4p9l_k_sfh8cfD9GU4J05rcMdrcG/s640/blogger-image-185312359.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_RsR2QjedHzD3tQ4CbHNkUTEYNv3K03dcqW14GUR31tnS2vz-23g8cbKwKBaSAKEvQVmPDFxEYjhWlaZZ9ofai3y3tjZYoaTzsSCMULWLLFjh0VTE4p9l_k_sfh8cfD9GU4J05rcMdrcG/s640/blogger-image-185312359.jpg"></a></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-33050204838965600532015-04-21T13:27:00.001-07:002015-04-21T13:27:59.996-07:00New Emma T-shirt (toddler version) Heart HeroHere are the new Team Emma t-shirts! A big thank you to <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=177800881" href="https://www.facebook.com/swoloszyn">Stephanie Mora</a> for designing them for us. The really neat thing about these shirts is that the "heartbeat" on the front is Emma's actual EKG reading....her heartbeat. All the instructions are on the website, but let me know if you have any questions. The shirts are really soft and comfy, but run a little small so read the sizing chart carefully.<br /><br />
<br /><br /><br />
<br /><br /><br />
<a href="http://www.booster.com/team-emma-toddler#.VTaydcAXS00.blogger">New Emma T-shirt (toddler version) Heart Hero</a><br /><br />
<br /><br /><br />
<a href="http://www.booster.com/team-emma-tshirt">http://www.booster.com/team-emma-tshirt</a> (YS-Adult 3XL) Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-18681494421522245072015-04-20T17:38:00.002-07:002015-04-20T18:02:57.539-07:00Weak Heart...Strong Spirit Part 2<div><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;"><br></span></div><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">Well, it's been a while since we have updated our wonderful, loyal blog followers. Our days are very busy trying to make small steps to improve Emma's heart function. </span><br>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
We moved to the recovery floor last Thursday and were settled into the nice new side. The heart failure/function team continues to drive Emma's care at this point. They are spending a lot of time focusing on Emma's fluid balance, nutrition, and electrolyte status. All of these factors play a direct role in how her body is reacting to her depressed heart function, as well as, how hard her heart is having to work to meet her body's demands. We are literally walking a very fine line on what Emma does and does not tolerate. One day, her medications are perfect for her and the next day we are chasing our tails. It can be extremely frustrating, and yet we know that this is how it's going to be until her heart is functioning more efficiently and her body heals from all the recent surgeries. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
One thing that has not escaped my precious daughter is her sassy attitude. We have been pushing her to get in her stander, do physical therapy, occupational therapy, and spend less time with her electronics. She is not a huge fan of these new rules, and she proves that by pushing Scott and I. The last two days, despite having her favorite things taken away from her, she waited until the last five minutes of her stander time to do her occupational therapy tasks that we've been trying to get her to do for an hour. It's good to see that fight in her; however, she has had her fair share of timeout times over the last couple of days lol. Being four and stuck in the hospital for months is not a good combination.</div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
We haven't really heard the "home" word lately, and Scott and I are having to cope with that possibility. We are not sure how long it's going to take her heart to recoup, or if it's going to recoup enough to support her little body, but in the meantime, we pray and push forward. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
We really appreciate all the continued support, prayers, and encouragement. It is not easy being separated as a family or being away from home, but we feel the love and support from miles away.</div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
Special announcement:</div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
We have had several people ask about new team Emma shirts. Be watching the blog soon because my wonderful, fabulous, super-talented best friend has designed new T-shirts and they will be for sale soon. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
God is good! All the time! God is good! We continue to praise him in this storm. </div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br></div><div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEMQu8eapMiVpOoZ6j67S1L2EZ09xZxz1WUgL2tdjT8-pzMqB5RuBKf-4Ot7oEG_OKfEILxTYPNhUOtYA2RURKbu19IBCy1hfP-zqvrhGgObPSNqcmyaRdxwsf-gvc5pw4Y0k0LH9CHbq3/s640/blogger-image-1536345993.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEMQu8eapMiVpOoZ6j67S1L2EZ09xZxz1WUgL2tdjT8-pzMqB5RuBKf-4Ot7oEG_OKfEILxTYPNhUOtYA2RURKbu19IBCy1hfP-zqvrhGgObPSNqcmyaRdxwsf-gvc5pw4Y0k0LH9CHbq3/s640/blogger-image-1536345993.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVfHGG9_NQJVrwpApE-sFkLmYSOEk3RBfNWy5-RuPDYDTKk6kMhJW0BZu8i79No5-hqYtGauqhKOgTzj2w4dl2ps2AKIAOr1lhRQ3Fznmx7HzHTkhjP67WUsTNrxRmfagjMTljruKPdeKE/s640/blogger-image-1537511795.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVfHGG9_NQJVrwpApE-sFkLmYSOEk3RBfNWy5-RuPDYDTKk6kMhJW0BZu8i79No5-hqYtGauqhKOgTzj2w4dl2ps2AKIAOr1lhRQ3Fznmx7HzHTkhjP67WUsTNrxRmfagjMTljruKPdeKE/s640/blogger-image-1537511795.jpg"></a></div><br></div>
<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVNaZI4FgcfxBzS73vYBolMKBhWO7lokFk_cAoCHHQgAGgN6aZZVNjQpEW7txJKICDwI0LSHrJIe_-TY230OCE3vq8s5DQ2YZujI2W9kMIpxGerI-f0cAbBJEwFcY0mEgoIV_oRcvq1ur/s640/blogger-image-1777995777.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVNaZI4FgcfxBzS73vYBolMKBhWO7lokFk_cAoCHHQgAGgN6aZZVNjQpEW7txJKICDwI0LSHrJIe_-TY230OCE3vq8s5DQ2YZujI2W9kMIpxGerI-f0cAbBJEwFcY0mEgoIV_oRcvq1ur/s640/blogger-image-1777995777.jpg"></a></div><br></div>
Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-85946075979936226782015-04-14T18:54:00.000-07:002015-04-14T19:00:11.510-07:00Weak Heart....Strong SpiritSorry for the delay. It's been a busy past couple of days. We have run many tests as we work up her heart and fluid status. Emma is doing ok. She has a lot of things, though, that we need to work out. Her fluid status is one, how her heart will recover from surgery is another, nutrition, so on and so on. Really, a lot of this will take time to figure out. This is the unfortunate reality of waiting to see. Praying all the way through this that everything will turn out ok. <div><br></div><div> So, to start, fluid status. Well this has and will continue to be a moving target for us with Emma. She responds so randomly to diuretics. This makes it difficult when we are trying to establish some baseline and plan for the road ahead. Also, what she needs now, may not be what she needs in the future, another frustrating and complex attribute. So, we continue to work closely to try and find a delicate balance. Today, we started the process of transitioning her off of continuous IV furosemide(diuretic) to intermittent IV furosemide. This is an essential step to try to move her in the direction she needs to go. </div><div><br></div><div>Second, her heart function. Emma's heart definitely took a hit during everything that she has recently had go on. What this means, is that her heart function is not the best. It's not the worst either. Somewhere in between. What's hard is trying to answer the question as to whether or not it will improve again, stay the same, or worsen sooner than later. So, all the doctors and teams here are really trying to work together to try to get her on everything she needs to be on medication-wise to improve her chances at her heart getting better. Also, we have recently brought in another team called the Heart Function Team whose sole purpose is to try and micromanage so to speak everything about her heart and trying to improve it. As you might imagine though, her heart not being in the best place is not easy to take. But we pray and lean on God for strength during this, guidance for decisions we make, and for her heart to improve. </div><div><br></div><div>Next topic, nutrition. So, currently we are doing ok nutritionally on what she is getting. Here is the hard part, this is not a long term type of plan for nutrition. But, until we get the other areas above figured out, this will kinda just have to work. </div><div><br></div><div>Through all of this, we are getting lots of smiles from Emma, lots of fun times. I am always so amazed by her strength as she goes through all of this. Most of this would shake me to my core if it were me, but she takes everything in stride and just amazes not only Sarah and me, but all the doctors and nurses, etc. that come into contact with her. For all the happy times, and her strength, I give God thanks!<br>
<br>
We appreciate each and every prayer and thought for our family and pray every night that God blesses you in the way that you have blessed us! God is good, all the time.. and all the time, God is good!<br>
<br>
Prayer Requests:<br>
1) Pray for her diuretics and fluid status that everything can be figured out.<br>
2) Pray for her heart, that her heart function improves.<br>
3) Pray for her nutrition.<br>
4) Pray for the doctors, nurses, and everyone that takes such amazing care of her.<br>
5) Pray for strength for Sarah and me.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8h5YMVDGDLNyuJBnmtd_KWa3bAPdBUzhDl97zYRKmy6An1qac3LQj5M9HFRSCAKitLgkchIMmBHLWFbK3GFxSjzaiashXIwX-Ffr-M4yDd3n5RaqpxRY58dAmhuarWy8ZTpNT3eM6mjyR/s640/blogger-image-599601088.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8h5YMVDGDLNyuJBnmtd_KWa3bAPdBUzhDl97zYRKmy6An1qac3LQj5M9HFRSCAKitLgkchIMmBHLWFbK3GFxSjzaiashXIwX-Ffr-M4yDd3n5RaqpxRY58dAmhuarWy8ZTpNT3eM6mjyR/s640/blogger-image-599601088.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfGoDgxzkB2auhFPRG-WeYlhi3I7vF4KJy6nPlxPzBRESXxUYBlnscaxGlZBQNXEuwW58vf5cnk77XVEyqP29G8Buj_-QWEl_MvrKlOvsNaXeqvJyKCbgEqumzB-5G0YZ6dBrOdlT-HRPI/s640/blogger-image-1706520827.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfGoDgxzkB2auhFPRG-WeYlhi3I7vF4KJy6nPlxPzBRESXxUYBlnscaxGlZBQNXEuwW58vf5cnk77XVEyqP29G8Buj_-QWEl_MvrKlOvsNaXeqvJyKCbgEqumzB-5G0YZ6dBrOdlT-HRPI/s640/blogger-image-1706520827.jpg"></a></div><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNtDbaKqC3TdafnJO2lqoihoDYOZ07U8gjEyfkDoXgzWCCnfXlbsHmjGeq2f8prhN8mgNPLBthxNGmcrbiLgDGDKND3w1PCcGoKupCF2GPCpS4ntfPXVj7XqWt8GD-mQCj4G7ZenW_M2XU/s640/blogger-image-1244024933.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNtDbaKqC3TdafnJO2lqoihoDYOZ07U8gjEyfkDoXgzWCCnfXlbsHmjGeq2f8prhN8mgNPLBthxNGmcrbiLgDGDKND3w1PCcGoKupCF2GPCpS4ntfPXVj7XqWt8GD-mQCj4G7ZenW_M2XU/s640/blogger-image-1244024933.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaS7gq9giwvLcfCtWDtoo__NXTCq7XOSelohe6lmz7ozyFEZEMXCl-wgJEBOk95niNXPO5pSNq0Qy7AVN819QSkG1jLzIReS7von8YPX33Yvb_-P42yUSZk8osxJeoIxn-NMYfHp-zgAUL/s640/blogger-image-737078133.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaS7gq9giwvLcfCtWDtoo__NXTCq7XOSelohe6lmz7ozyFEZEMXCl-wgJEBOk95niNXPO5pSNq0Qy7AVN819QSkG1jLzIReS7von8YPX33Yvb_-P42yUSZk8osxJeoIxn-NMYfHp-zgAUL/s640/blogger-image-737078133.jpg"></a></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com0tag:blogger.com,1999:blog-4843526988083008045.post-14858090540132708882015-04-11T21:28:00.001-07:002015-04-11T21:28:16.892-07:00We Need Pee After a decent day yesterday, Emma is struggling with renal (kidney) function today. Please pray that her kidneys will perk back up. We are hopeful that she was/is dry and that one of her meds she was on has aided in making her kidneys unhappy, so that the changes we made today will help improve the function. She needs to have more urine output so that she is not so puffy. <div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqIWwht4FdN3ksHAYIPRh8cOo_fR6kEUBYn9O-dbKDRWj_e1XEGk3KkDStrMlgabjl3C-UXguUKeIoG5O_mScmxeaQCjAz9rIUGdJqTDrplWbxmXMkboqsie4l5DX9bFSOe4tGnftHVPpu/s640/blogger-image--1098504982.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqIWwht4FdN3ksHAYIPRh8cOo_fR6kEUBYn9O-dbKDRWj_e1XEGk3KkDStrMlgabjl3C-UXguUKeIoG5O_mScmxeaQCjAz9rIUGdJqTDrplWbxmXMkboqsie4l5DX9bFSOe4tGnftHVPpu/s640/blogger-image--1098504982.jpg"></a></div><br></div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com2tag:blogger.com,1999:blog-4843526988083008045.post-86094464012706956612015-04-09T19:02:00.001-07:002015-04-09T19:02:56.652-07:00Finding BalanceThis is a quick post...not much to tell. The goal for today has been to pull fluid off Emma's body to see if less fluid will decrease the work load in her heart. It has been a slow process, but she is not as fluid overloaded as she was yesterday, but we still have a long way to go.<div><br></div><div>Her stomach is bigger and we just knew that since her drain came out, she had accumulated more abdominal fluid; however, that is not the case, so we are at square one with figuring out why her belly is so big.</div><div><br></div><div>Basically, Emma needs to eliminate a lot of fluid off her little body, so we can see where her heart is going to settle.</div><div><br></div><div>Thank you for the continued prayers as we move forward into the unknown.</div><div><br></div><div>God is good! All the time! God is good! </div>Sarah Stewarthttp://www.blogger.com/profile/16236036033792150049noreply@blogger.com1