Sunday, March 31, 2013

Hippity Hoppity Easter's On Its Way!

Happy Doctor's Day

Happy Doctor’s Day!

We have been very blessed with the medical staff that has been a part of Emma’s journey.  Once we established (to the doctors) that Emma was worth fighting for, we found a team that agreed to help us in that fight.  I seriously doubt that any of her doctors read Emma’s blog; however, I will briefly write a small synopsis of what each of the “main players” mean to us.  If they read it, I hope they see how much of a difference they have made in Emma’s life.  If not, please read of the selflessness these doctors show on a daily basis.    

Dr. Forbess: 

Oh Dr. Forbess, words cannot truly explain how much trust we have in you.  I know how unique Emma’s case has been, and I know that she has presented her fair share of challenges, and yet each time you have taken her into surgery, you carefully/skillfully cut open our precious daughter’s chest and work tirelessly to try to take an imperfect heart and make it work perfectly for our little Princess.  We appreciate how passionate and methodical you are before, during, and after surgery.   We have enjoyed getting to watch you perform your art like only a skillful artist can.  Also, thank you for expressing your appreciation for the work our MLH of Dallas group is doing.  It means a lot that the Chief of Pediatric Cardiothoracic Surgery notices and is grateful for what we are doing for the families at CMC.   

Dr. Matthew Lemler:

You were one of the first doctors we met at Children’s Medical Center of Dallas.  You knew Emma before she even arrived.  You knew she would present great challenges and were extremely honest with us about what we were about to face.  In fact, your honesty is probably one of the qualities that we appreciate the most about you.  I don’t know if you remember, but out of the six cardiologists that saw us prenatally, you were the one the stopped by Emma’s CVICU room regularly to check on her and on us.  Those qualities were why we asked you to be Emma’s primary cardiologist.  You have helped us through so much and have monitored Emma so closely to give her the best chance possible.  Don’t worry, I won’t tell any of the other patients that we are your favorite…;) ha ha! 

Dr. Josh Koch:

One of the first memories we have of you is not one of our best, but it helped us gain respect for you and your responsibilities.  The first terrible night that Emma crashed: you had left for the day, but came back and worked calmly and patiently (even though I thought you were working too slow) with the fellow to determine what to do in order to get Emma back to a stable place.  After that, our respect and admiration for you grew and grew.  You calmed me down multiple times and truly listened to our concerns when we felt like no one else was.  But probably the act that means the most to us is when you offered to pray with us before Emma’s Norwood.  Your compassion and willingness to work with families to make the CVICU a truly family centered care unit is bar none.    

Dr. Nugent:

You are the very first doctor to perform a procedure on our dear daughter.  Little did either of us know the journey we would all take together?  You did an impeccable job day one of opening up Emma’s intact atrial septum.  You gave her the opportunity to live another day and for that we are thankful.  We trust you above all others in the cath lab with Emma even though she can be extra ornery for you.  You have added humor to our lives when we needed it and take time (even if you don’t have a lot to give) to explain everything that is going on and how it relates to Emma specifically.  We adore you just as much when you are attending in the CVICU.  Thank you MATE!    

Dr. Sarah Troendle:

I do not think I ever truly understood the value of a great pediatrician until Emma came along.  We had trouble finding someone that even understood Emma’s complex health issues.  When we heard about you through a fellow heart buddy we were very excited about the prospect of finally finding someone who could understand Miss Priss.  Once we found out that you had trained at CMC and knew Emma’s cardiologist well then we knew it was the perfect fit.  You have such a compassionate spirit.  Your kindness, empathy, and thoroughness mean the world to us.  You always take the time to give Emma the medical attention she needs and are constantly advocating for her needs.    

There are many other doctors (Dr. Clay, Dr. Green, Dr. Wolovits, Dr. G, etc.)  that I could list, especially those in the CVICU that worked so diligently on Miss Priss during her year long stay.   You are appreciated more than you will ever know.  Thank you for giving of your time to help “fix” our little one’s broken heart. 

HAPPY DOCTOR”S DAY from the Stewart Family! 

Emma when she was practicing to be a doctor!

Tuesday, March 26, 2013

A Much Needed Update

Hey all!

Let me start off by saying thank you to everyone that continually prays for Emma and us.  It still means so very much to us.  Also, a special thank you to all those out there that ask how Emma is doing all the time and exhibit so much care for us!  Now, I know it has been a long time since our last post when Emma was in the hospital, so I will try my best to catch everyone up.  Since Emma was in the hospital, a lot of things have gone on in our lives.  So below I will list some events that have gone on since our discharge:

1)    Emma got plagued with another cold after she got over RSV.  So come to find out, our pediatrician said that many kids that had gotten RSV and then caught another cold, had a cold that strangely resembled RSV.  Emma was lucky enough to be one of these few.  She got all congested again and was sneezing and coughing and we knew it was another cold.  After taking her back to the pediatrician... it was confirmed.  Our sweet little girl had caught yet another cold.  She was not real happy and it did resemble RSV again, but she recovered after about a week with us again treating her very similarly to RSV.
2)    Emma had a followup appointment for her scoliosis.  Well like many things in Emma's life, things have never just “come easy” or gone “as planned.”  So when we went to Emma's scoliosis appointment, we were reminded of this truth again.  At the initial visit to assess her scoliosis, we were given somewhat good news that her scoliosis was not bad enough to really do anything and they would just watch it.  Well, after being a big girl for all the xrays needed to reevaluate her, we were told that her scoliosis had in a way worsened.  Now, the first xrays we evaluated her on were taken when she was laying down.  So, there is a chance it may be unchanged or just slightly worse.  But either way, the degree of curvature of her scoliosis worsened.  That's when the conversation got interesting.  It got interesting because the doctors there had a difficult decision of how aggressive they want to be with everything else that Emma has on her plate.  After some discussion, it was decided for us to try a brace.  So my amazing wife took Emma up and got her brace cast made and now we are fixing to go back and learn how to get her in it and make some minor adjustments while we are there.  This appointment will be coming up on April 1st.  So please pray that everything will go well and she will tolerate this brace very well and that it will help her scoliosis.
3)    Now to more recent news.  Last night, Emma developed a cough.  She woke up throughout the night and every time she woke up, we could hear more and more congestion developing.  We are pretty sure Emma has yet another cold!!!! ( I know... right???  How many of these can she get from staying indoors pretty much all the time!!??).  So please pray she gets over this soon.

*******Side not from Sarah:  Took Emma to the doctor today and her lungs sound nasty.  We are starting her on an oral steroid for 5 days and then will do an inhaled steroid.  We are also being referred to a pulmonologist as Emma is dealing with symptoms like this every couple of weeks.  It is miserable for her and none of us are getting much sleep.  

Emma is still doing therapy several times a week.    It is a slow process but we are seeing good development in some areas and not so great development in others.  Not only is she physically developmentally behind, she is also intelligent enough mentally to fight us during many of her therapy sessions.  She at times will choose to just not do what we are asking her to do.  Oh the joys of this age child and the temper/attitude that comes with the age. :)  She is eating well, but still not liking to drink very much.  Therefore, we of course still have the NG tube to give her her liquids each day.  She spends several hours a day in her standing frame in attempts to strengthen her leg muscles to try and prepare her to one day walk.  All in all we are very proud of her even though she loves to fight us during therapy sessions!! ;)

      Well I believe I will conclude this update here.  As always, we thank everyone for all the thoughts and prayers for our family!  We will try to update now more on a regular basis from now on! :) 

      Some specific prayer requests:
      Pray that Emma will get over her cold (or whatever this is) quickly.
      Pray that Emma's scoliosis brace will be a success.
      Pray that Emma will continue to progress well during therapies.
      Pray that Emma's heart will continue to stay strong and function properly.
      Pray for strength for our family as we ride this roller coaster ride called Life. 

As always, God is good all the time.  And all the time, God is good!

Daddy Scott

Classic Emma Face

Took My Grandma and Cousin Samantha to the Spring Tea at the Dallas Arboretum 

Sweet Smiles


Sunday, March 24, 2013

Way Behind

We are so sorry we have not posted in. Awhile. It has been really busy around here. Emma is doing fine. Scott will update with a detailed post tomorrow. Sorry for the delay and thanks for the patients.