Sunday, December 29, 2013

Merry Christmas and Happy New Year from the Stewart Family

Stewart Christmas Letter 2013

Merry Christmas and Happy New Year from the Stewart Family.  2013 was a great year for our family.  We were able to vacation at Lake Texoma, go to the Great State Fair of Oklahoma, spend most of the major holidays in Oklahoma, watch our precious Emma grow and learn, adopt a puppy, and so much more.  

What a great, eventful, fun, wonderful year Emma has had.  Emma has made tremendous strides in her therapy over the last year.  With the help of her dedicated therapists and nurse as well as new medical equipment (i.e.: wheelchair, standing frame, crawler, ankle braces (AFOs), etc.); Emma has gained muscle strength, cognitive abilities, better communication techniques, fine motor improvement, and overall better understanding of the world around her.  She continues to surprise us with her drive to learn and grow. 

Last Winter, Emma contracted RSV which manifested itself as restricted airway disease aka asthma.  This has been an ongoing battle for Emma as she already has compromised respiratory system.  She is on a lot of medication in hopes to keep it at bay; however, the fall and winter months are hard on her and result in intermittent periods of 24 hour oxygen support, full feeds through the NG tube (doesn’t feel like eating), and long days/night of coughing spells.  Emma continues to see an onslaught of doctors for various health issues.  She is currently stable cardiac wise, but will more-than-likely undergo a cath lab procedure this coming summer to help us determine the next steps to take to help her heart.

Obviously, the majority of my time is spent taking care of my sweet Emma.  I take her to all of her doctor appointments, arrange her therapy and nursing schedules, handle most insurance debacles, and most importantly spend lots of time getting snuggles.

I have been working diligently on my PhD.  I passed my qualifying exam last November and officially received my IRB approval this October.  I am currently gathering data for my dissertation at a wonderful private school nearby.  I am enjoying being back in the classroom and watching the darling pre-k class in action.  My goal is to have my dissertation finished before the end of Summer 2014. 

I am also a Coordinator for Mended Little Hearts of Dallas.  I visit heart families in the Heart Center at Children’s Medical Center in Dallas, gather materials for and assemble Care Bags, and help educate and promote Congenital Heart Defect Awareness.
My wonderful husband is still working for Pharmcare USA.  He has worked for this incredibly caring company since he was in college.  He is now a Director for Clinical Services.  He travels frequently all over Oklahoma and Texas (and sometimes beyond) to nursing and assisted living facilities.  He truly puts his heart into helping the residents and ensuring that their pharmacy related needs are being met.  I am so thankful for a husband who works so hard to provide for his family.

In his spare time (what little he has), he enjoys running, working out, playing video games (to my, and spending time with his family.  Emma just lights up when he gets home.  He can make her laugh like no one else.      

Max is the new addition to our little family.  Maximus (Max) was Scott’s Birthday present this year.  He has wanted a puppy for a long time and I finally gave in to his request.  We adopted Max from Collin County Humane Society at 7 weeks old.  They know his mom is a Rottweiler, but his dad is unknown.  Either way, he is going to be a BIG dog.  He has been a joy, aside from the indoor potty incidents and random chewing on things he is not supposed to be chewing on.  Emma likes him more and more, which is a good thing because we are going to be sending Max to school to become either a service or therapy dog in about 4 months. 

We appreciate the continued prayers, support, and encouragement each of you send our way.  We are so thankful for all of our friends and family who make life’s journey easier, more fun, and even a little more interesting J!  We pray that each of you have a great 2014.  Please remember that our purpose on this Earth is to serve HIM who makes our life worth living. 

As always, God is Good!  All the Time!  God is Good!
Scott, Sarah, Emma, and Max

Wednesday, November 27, 2013

A Humbling and Meaningful Experience as a Dad and an Update on Miss Emma

Hey all!  I know it has been a while since the last update and it is my turn to do it.  I am sorry for such a delay!
                Let me start off by talking about what it was like for me to be with Emma for one week by myself while Sarah was spending some girl time on a cruise ship.  It was Sarah’s idea to have me post this experience on here.  I hope I can do it justice as I type these words.  So, when Sarah headed out, I thought to myself, “Oh this will be a relaxing week with my daughter!”  Relaxing, was not the appropriate word.  I did not realize all that my beautiful wife does when it comes to our daughter!  She has a very full schedule every day.  Which for me, schedules come easy at work, but don’t always come easy at home.  So, I had to keep making myself go back to the schedule so that I didn’t miss anything.  Emma was a trooper through all of her dad’s failures that week, and gave me a smile when I needed it most.  I remember distinctly thinking within the first couple of days, “Oh its night, time to relax a little bit.”  Then it would dawn on me, “Oh man, I still have to do laundry, the dishes, pick up the mess upstairs, etc.”  It sounds ridiculous, but it’s true.  I often try to help Sarah with all of the chores and everything, but never have I realized her long it takes to do all of that on your own. As you might be wondering out there, I was gaining more of an appreciation every day for you stay at home moms!  You truly have one of the toughest jobs on Earth and I commend my wife, and all of you, for everything yall do every day!  About midweek though, I started to get in some sort of an “organized” groove.  But, when our nurse would come to watch Emma, I immediately needed to either get caught up on something I had forgotten, or escape for a Dr. Pepper (sanity break)!  Despite all of the things that I had to learn, I also was so blessed that week.  My daughter was getting to spend a lot of one on one daddy time!  She was getting to laugh with me, throw fits with me, enjoy life with me.  Something I don’t always get enough quality time to do.  And as the week went on, though I was frustrated at times and though she was frustrated at me at times, we still had so many amazing moments as Daddy and daughter.  It was truly a blessing, an eye opener, and a way to truly humble oneself.  When Sarah got back, I was not sure if I wanted to give that time up.  Even though I was so glad to see her, to have her also share in responsibilities again, I also realized that her being back signified the end of my being THE DADDY.  Meant I had to again share those laughs, those tears, those precious moments.  But, I also knew that with her back meant we were a complete family again and who better to share everything with than her.    
                To my wife, I hope you realize after reading this that I gained an appreciation unlike ever before for all that you do for Emma and our family.  I will strive to not take that for granted.  Strive to make sure you realize how truly blessed I am to have you.  To my daughter, Emma, I want you to know how truly blessed I am to have such a sweet daughter.  One that loves life, and loves those around her.  One that radiates her blessed life to everyone who comes to know her, and those that don’t.  Thank you for being patient with me during that week, and for loving me through my failures.  To other dads/husbands out there, learn from me and do not take your wife for granted.  Your wife, like mine, is truly a blessing to you, a helpmate, a friend.  Treat her as such!  I hope that you hold me to the same standard that I have challenged you with.  To other moms/stay at home moms, you all amaze me.  Having to walk one week in your shoes might have been one of the most humbling and meaningful experiences I have had in a long time.  

Now, to an update on miss Emma.

-Update on Emma-
                First off, Emma has a nasty cold that just keeps continuing to give her a hard time.  Her sats and overall energy level are good.  However, you can tell it is no fun for her to be all snotty and congested all the time.  We are both praying that she gets over that as quickly as possible.  However, tis the time of year for this crud, so keep her in your prayers that she can get over this cold as soon as possible!
                Second, Emma is doing great in therapies.  She is learning more things it seems every day.  Also, trying more new things which is great!  She has been learning more signs such as daddy, mommy, grandpa (which is hitting the side of her head, not exactly the right sign but it is her sign for grandpa!), etc.   Doing great with that area!!!  She got a new crawler.  This is a piece of medical equipment that will help her with motions of crawling and provide overall strength training for arms and legs.  She is putting more weight through her legs.  This also means she needs less and less help with things like sitting to standing.  She still needs assistance while standing, but putting more weight through her legs means less assistance, which is a victory for her!  She is stacking blocks, stringing beads, following better directions, recognizing flash cards, picking correct flash cards when asked, etc.  She is also doing great in her wheelchair.  She is moving herself all around the downstairs and outside as well!  She seems to enjoy it so much now!  She is also grabbing real silverware (spoon, fork, etc.) and mimicking us eating!  She is mimicking the motions of brushing teeth, combing hair, etc. 
All in all, she is just amazing us with all she is learning and wanting to do!  She never ceases to amaze us with how happy she is every day.  Each day we realize how much she is blessed and how much she is a blessing in our lives.  Thank you all for the support you have shown and continue to show our family through all the thoughts and prayers!  May God bless each of you as he has blessed us!
God is good, all the time.  And all the time, God is good!

Daddy Scott

Sunday, October 6, 2013

Happy 3rd Birthday Emma Janae

It has been a year filled with so many wonderful memories.  It was our first year to really let you experience life outside the walls of our home.  Your day-to-day is filled with many therapies.  You wake up in the morning with a smile on your face and talking/singing to your stuffed kitty cat.  You never have much time to settle into your day and sometimes you are NOT ok with that.  I understand, but I continue to push you and provide outlets for you to learn and grow.  You eat breakfast, get dressed, 2 breathing treatments, meds given, and wait for your therapists to arrive.  You have great therapists who truly care about you and your development.  They are constantly praising and encouraging you.  It is never about what you can’t do, but what you are doing.  That makes mommy very happy because I have never put limits on your abilities.  Ms. Danielle, Ms. Cindi, Ms. Courtney, and Ms. Samantha constantly push you to work harder.  However, you don’t particularly care being pushed out of your comfort zone or being put on your tummy.  Their guidance, our homework follow through, and your will pushed you to make great strides in your therapy goals.  Way to go sister.  There is NOT a single person on this earth that will label you or say that you are not worth fighting for.

After your morning therapy sessions you are ready to play.  You love your standing frame.  In fact, you point to it frequently and sign please.  You typically spend around 3 hours in your standing frame a day.  In fact, we take your standing frame everywhere we go.  Your legs have built up significant muscle, and you can now stand in your standing frame without any of the support straps buckled for approximately 30 mins. 

Before nap you usually have wheelchair time.  You are getting really good at the wheelchair.  You will actively and purposely use the joystick to move your "Power Wheels."  We just have to watch out because you are not great with directions and can easily move furniture.  

After wheelchair time you typically eat lunch and do a few more therapy exercises.  You enjoy nap time.  I think your sweet little body just wears out after all of that work.  You typically take an hour and a half nap and wake up just jabbering away.  

Your afternoon and evening are once again filled with two meal times, standing frame, play time with Daddy, bath (least favorite activity) and bedtime.  One of my favorite times of the day is tucking you into bed.  You love story time.  We always sing "your song" and say night-night prayers.  You almost always sweetly "sing" along and help "say" the prayer.  These are the moments I cherish sweet girl.  I watch you growing up before my eyes and am truly amazed at what God has done in your short little life.

Other Year Two Highlights:

You spent your first Christmas at home.  We actually got snow and we spent much needed time together.  It was perfect (in your mommy’s eyes at least).  We even talked Daddy into having Christmas lights put on the house.  We also went to Ada and celebrated with your aunts, uncle, cousins, and grandparents.

January-April: These months were spent at home mainly.  You unfortunately developed RSV despite our best efforts to protect you from this nasty germ.  You actually managed to stay out of the hospital, but the RSV triggered asthma (reactive airway disease)  and really caused you a lot of respiratory issues during the winter months.  You also caught a stomach bug which landed you in the hospital for a couple of days.  Mommy caught the stomach bug from you… really did not have to share…ha ha!  We spent several months trying to ups 

We took full advantage of the non-germy summer season.   Gramma took you to the Dallas Zoo.  You loved seeing the animals that were close to you.  Your favorite part was feeding the giraffes.  It was so much fun to watch you laugh and experience your love for animals.

We took our first family vacation to Lake Texoma.  We had beautiful cooler-than-normal weather and you thoroughly enjoyed the trip.  You went on boat rides, spent most of your day outside, ate corn on the cob for the first time, saw fish, played with your extended family, attend the family reunion, and blossomed before our eyes.  It was a great trip and your smile and enthusiasm for life was infectious (in a good way). 

We ended our summer/out-of-bubble time by going to the State Fair of Oklahoma.  You did not particularly care for the outside activities because it was pretty warm that day.  You did enjoy the Disney on Ice show and looking around at all of the indoor exhibits.  

Oh, we also got you a puppy.  We adopted him through the Collin County Humane Society.  His name is Maximus and he is going to be a BIG dog (part Mastiff).  At 8 months old he will go through a therapy training course to help make him the BEST dog for you.  You are not real sure about him, but enjoy watching him play from a distance.  I think once he calms down, you will really like him.  

It has been an amazing year with you sweet girl.  We are so very blessed to have each day with you and we do our best to cherish each and every moment (yes, even the tantrums).  We look forward to seeing what this year holds for you.  I love you so much and pray that God continues to shine through you for however long we get to love you here on Earth.  Happy 3rd Birthday Emma Janae.

As always, God is Good!  All the Time!  God is Good!