New Medical Equipment

Standing Frame, Leg Braces, and TOT Collar

Medical Update Post

I have been a terrible blogger..........I sincerely apologize!  Maybe that will be one of my New Year's Resolution....ha ha!

Our last major update was late September, so I will do my best to update on all that happened since then....So get ready, hang on tight, put your reading glasses on. and HERE WE GO!

1. Emma's Medical Update:
• Nephrology (Kidney): 
• We got to the doctor's office and apparently her doctor was having some sort of pregnancy issues, and all of the other nephrologists were "too busy" to help.  Needless to say, we got nothing accomplished at that appointment.  The good news is that her last Kidney Sonogram showed that she passed a stone and only has one left.



Waiting on the Nephrologist

• 
  
• Opthalmology
• We got Emma into a new Ophthalmologist.  He is wonderful, and to top it off, he is friend's with Emma's surgeon.  Emma's strabismus (eye pulling in) is still bad, but her nyastagmus (shaking) is almost resolved.  Emma also has some mild near sightedness but nothing to address at his point in time.  We are patching again for her strabismus and if it is not any better in a year, Emma will need surgery to correct it.  



New Ophthalmologist Office

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• Cardiology
• We got approved for Emma's synagis (protection against RSV).  Scott, her cardiologist, and I spent hours on the phone with the insurance companies to get this approved.  It was no easy task as Emma is "over the age limit", but this Mom does not take no for an answer.  Emma will get these shots every month through viral season.  As far a cardiac wise, Emma seems to be stable.  Her labs look good and we have been able to wean her off of her oxygen during the day.  :)



Goofing off at the Cardiologist




• 
  
• General Pediatrics:
• Emma's allergies have been terrible lately.  It has turned into somewhat of a cold; however, she seems to be holding her own.  We took her in to see the pediatrician and her ears and throat look fine, so we are just suctioning her little nose out (not her favorite thing).  
• 
  
2. Emma's Therapy Update:
• Physical Therapy:
• Lots of Changes here:
• We ordered Emma a standing frame and AFOs (leg braces) to help with her low lower body muscle tone.  Both of these should be in by Christmas.  We are anxious and excited at the same time to see how these items help her in the muscle department.  Click here to see what a standing frame will look like  Emma is doing well with her rolling, sitting, kneeling, etc.  She still doesn't "enjoy" her therapy, but she participates....most days: :)

• Speech Therapy:
• Emma is eating like a champ.  She is pretty much taking all of her calories by mouth which is AMAZING!  The issue we have is with drinking.  She wants absolutely nothing to do with drinking, so that is what we are working on the most right now.  
• Occupation Therapy:
• Emma is finally wanting to use her hands more.  As you can see in the picture above, she loves to play with her stars.  She also loves paper and she does a lot of "homework"
• ECI:
• We just got Emma signed up for ECI.  She will be seeing an Early Childhood Behavioral Specialist once a week starting in December.

Emma's 2nd Birthday Slideshow Large

Happy 2nd Birthday to OUR Sweetheart!

Red Balloon Run and Ride/ Team Emma's T-shirts

You have until tomorrow evening to order a TEAM EMMA t-shirt. They are 10.00 each (plus 2.00 if you would like them shipped to you). I will be sending out a chart of who has ordered so far tonight. Please check your messages to make sure your order looks correct. BIG THANK YOU to all of our wonderful TEAM Emma supporters.

Also, you still have time to register for the Red Balloon Run and Ride. If you cannot attend but would like to help the hospital that was so wonderful to Emma you can donate to the HEARTS of FIRE team at: www.redballoonevent.org 

RED BALLOON RUN AND RIDE INSTRUCTIONS


Step 1: Go to: http://www.redballoonevent.org/

Step 2: Click on Register

Step 3: Click on Register for the Run

Step 4: Join a Fundraising Team

Step 5: Type Hearts of Fire into the Team Name and hit Search for a Team

Step 6: Scroll down and you should see the Hearts of Fire info

Step 7: Click Join

Step 8: Fill out the form

Let me know if you have any other questions!


If you register for the Red Balloon event please let me know because Scott and I are donating for each person that joins this wonderful event. — with Scott Stewart.

T-shirt design

Emma's Trip to the Pumpkin Patch

Update on Miss Emma

So I thought I would get on here and type an update of some new things in Emma's life and some exciting things she has done recently.

Emma is enjoying more and more food each day.  She has recently started eating pasta primavera baby food which has chunks of pasta, a huge accomplishment for her to eat food with solid substances in it!  Yay!!  She is also eating the little kids puffs snacks.  She is not too sure of them, but once we get it in her mouth she seems to like the taste.  We are still working with her on taking in more fluids by mouth.  She does not really like that, but it is a work in progress.  Small steps are still steps!


Emma recently went to the state fair of Oklahoma.  We took her stroller and rain cover (which came in very handy as it did rain when we were there) and she seemed content most of the day.  She was in sensory overload seeing all those people and just kept looking at everyone that would come near her! ;)  It was so neat to see her expressions of things and watch her looking at people going by her stroller.  This was a huge step for her.  She usually does not do too well in situations where she has to be in one place, i.e. her stroller, for long periods of time.  She did so good though and we were so proud of her.  She even got to go and watch the Disney on ice show!  She loved the lights and the music until she had a diaper and then it was no fun for a few minutes until we changed her! Hehe!  All in all it was a long fun filled day for us and we were so glad she got to partake in that experience and was well behaved!

Emma has been coming to church both Sunday morning and Sunday nights with us!  She is doing so well sitting through the whole worship service.  She hardly throws fits and just sits contently in the chair in between Sarah and me.  We haven't had anymore blasting "PEEK-A-BOO BARN!" app noises occur during the prayer, which is a good thing.  I am sure everyone around us is thankful of that.  Funny story though, Emma loves playing with hair.  She would play with Sarah's hair for hours if we would let her.  So one Sunday we are sitting there and they announce for everyone to stand up for the closing song.  Well Sarah, Emma, and I stand up and I glance over to see Emma reaching for the woman's hair that is in front of us!!!!  (Inside I'm thinking,"OHHHHHHH NOOOO!!!!!" HAHA)  Sarah thankfully grabs her hand before she can connect.  We laughed about that for probably 20 min!  I guess it was Emma's way of "reaching out" to her! :)

Emma also recently made a trip up to her Gramma and Grandpa's house to see the ducks that live on their pond.  They have names but I'm not 100% what they were so I won't put them on here.  Last I heard, there was a debate about the names because it is thought that they are both male ducks not a male and female.  :)  Anyways, she got to see the ducks up close which was neat for her due to them coming up and eating out of our hands!   Emma, though, was not too sure of the ducks and did whine and cry a little when they came close, but still a neat experience!  She also got to ride on Grandpa's tractor, which she, for the most part, enjoyed!

All in all, we have had a lot of fun as a family these past weeks.  We are so proud of her for not screaming through all of these new experiences as they could have potentially been very scary for her.  Sarah and I are so proud of her and the progress she is making.  It may be small steps, but like I said earlier, steps non-the-less.

Prayer Requests:
1)  Continue to pray for Emma's future.  That God makes her plan known to all the doctors and to us.
2)  Continue to pray that she keeps making good strides with her therapy.

Thank you all for the prayers, thoughts, and love that you constantly show our family.  We love each of you and are so blessed to have so many caring, wonderful, uplifting people in our lives!

God is good, all the time!  And all the time, God is good!

Daddy Scott
(aka- Papa Bear)

Developmental Delays Debacle

Truth: Emma has developmental delays.

This past week has been extremely emotional.  Emma had three big appointments this week including: Neurology, Cardiology, and Orthopedics.  Our week started off with a BANG….and not in a good way.   We saw a neurologist this week for a yearly evaluation.  It was just Emma and I at the appointment.  The appointment was brutal in so many ways.  I have debated on whether or not to even put this appointment’s details on the blog; however, I WILL NOT EVER TOLERATE any medical professional degrading my child.  Anyways I digress….

The Neurologist (who shall remain nameless) had some very harsh things to say about my precious little girl.  Scott and I are very much aware that Emma has developmental delays.  What we do not know is if the delays are a product of enduring a prolonged hospital stay (being EXTREMELY SICK FYI), from neurological issues, or perhaps a combination of both.  If you have followed this blog from the beginning, then you might remember that via a head ultrasound on day 1, the doctors believe that Emma is missing her corpus callosum.  Due to Emma’s medically fragile state, she has never had an MRI.  This is shocking to a lot of people as it is common when children have “coded” or have brain abnormalities.  Emma has, BIG THANK YOU TO OUR WONDERFUL GOD, not had seizures or a stroke.  Emma has progressed although slowly compared to the norm.  We measure Emma’s developmental milestones by Emma.  I have always told our therapists to please not tell me “Emma’s” developmental age according to their charts.  I do not think that it is fair to be compared to “normal” children who had the privilege to develop in a normal environment and manner. 

At this appointment the neurologist said:

            You need to consider “quantity” over “quality”

            These kids normally do not live to be teenagers anyway

            She will probably never walk

            We should treat “these” kids like we do 80-year-old elderly people with no                         quality of life.

If she has to be considered for transplant I do not know if I would recommend that due to her quality of life.

I could add more, but I think you get the gist.  I refused to shed a tear in front of that heartless doctor.  I am giving this person the benefit of a doubt that they are simply ignorant.  This “professional” probably thought that they were giving me such life-altering information that would change my opinion of Emma’s future care--------FAT CHANCE of that happening.  This fueled my fire and passion for ensuring that Emma would always be given a chance.  I refuse to let negativity about her future be spoken in her presence.  We have spoken to some key people to educate them on this terrible appointment and have some more people to talk to.  What scares me the most is that this individual can help decide who is worth living and who is not.   

We also saw the cardiologist and orthopedic doctors this week.  Emma had the whole work up at the cardiologist: ECHO, EKG, Lab work, and went home with a 24 holter monitor.  Overall things looked good.  Emma was not in the best mood and did not want to fully cooperate with all of the tests----strong-willed much J 

Her echo showed trivially worsened function, so we started Emma on a small dose of a heart med.  Our cardiologist was not too concerned because Emma has done this before and clinically she looks great.

Emma is now being seen a Scottish Rite for her scoliosis.   This appointment was very quick.  We pretty much confirmed what we already knew.  Emma has a mild version of scoliosis.  She does not need any intervention at this moment.  We will take her to Scottish Rite every 6 months for follow-up x-rays.

As you can see, Emma has been a very busy little girl.  On top of all the appointments, Emma has continued her home therapies.  Her therapists are happy with Emma’s progress.  She likes to keep her therapists on their toes.  Emma likes to do what we want her to do in therapy after her therapists leave.  Emma is trying so hard to communicate with us.  We have been working very hard with her to learn more signs, show us pictures, and point to what she is wanting.  She continues to eat well and will eat pretty much any pureed food we give her. 

Did I mention strong-willed----well the other day Emma was not getting her way and threw a little fit.  When she did she threw herself back and bonked her little head on the floor (carpeted).  This has scared her, so now she will only sit by herself if we are right next to her, or if she can feel a pillow behind her.   I think this is also a way for her to ensure that we are paying attention to her all the time. 

Emma has got to do a lot of fun things lately.  I will share those with you soon in another post.  This mom is tired and if history repeats itself my sweet little girl will be up at the crack of dawn ready to play.

Thank you again for all of your prayers. 

Prayer Requests:

Please Pray that Emma will continue to progress in her development to prove the naysayers wrong.

Pray that Emma’s scoliosis remains mild.

Please pray that Emma’s heart function returns to normal.

As viral season approaches, please pray that Emma can stay infection/virus free.

****Please pray for our buddies in the HEARTLAND.  This week has been difficult for many families.

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

Sarah

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made. Psalm 139:13-14.

Note a wrote right after the appointment to vent a little:

Dr. Ignorant Dr. (not cardiologist),

My child HAS a quality of life. No, she is not walking; however, she is starting to put more weight in her legs. Please take into consideration that she spent a year out of her first 15 months hospitalized and for the majority intubated and VERY sick. That does have an impact on their developmental levels.

Yes, I understand that she has had lower than normal oxygen levels since birth (she is a single ventricle). Yes, I understand that this can cause brain issues and might be causing some muscle issues. However, this DOES NOT in any way constitute you telling me that maybe I need to consider "quantity vs quality" and maybe the doctors in the pediatric profession should consider treating "these" children like elderly who really have no quality of life...UGH...

Also, I am aware that she "may" not graduate high school. That does not mean that I am not going to do my best to prepare her for however long we are blessed with her.

Please do not diagnose my child with conditions that can only be diagnosed with an MRI that she HAS NOT HAD.

DO NOT put limits on my child. There are children who walk AFTER 2. WE do not LIMIT my child therefore you do not have the right to do so. My child may not fit into your definition of normal, but I could care less. She is perfect to my husband and I.

Sincerely,

A HEART MOM

P.S. Yes, we are looking for another specialist in this field.

Classroom Project???

Would any of my teacher friends like a 100 day project that will benefit families of children with Congenital Heart Defects? If so, please send me a message and I will give you the information on how you and your class can help. Also, if you know of any teachers or schools who might be interested please let me know! THANK YOU!

Red Balloon Run and Ride

Red Balloon Run and Ride

I have had several people inquire about the Red Balloon Run and Ride benefiting Children's Medical Center....

Here are a few details....

1. Please register with the Hearts of Fire Team....
2. We are working on TEAM EMMA t-shirts and will give you the opportunity to purchase soon.
3. For everyone who participates in Emma's honor, Scott and I will donate 10-15 dollars per person for the Heart Center at CMC Dallas, so please let me know when you have registered.
4. You do NOT have to participate, but a lot of family and friends have asked, so I wanted to give everyone the opportunity.

Please let me know if you have any questions!


 Thanks~Sarah 






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