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



  1. Thanks for the update! I check your blog frequently and was relieved to see an update on Emma after her hospitalization in February! Still sending healing thoughts and prayers in your direction. :)

  2. Thanks for the update..will be praying for Emma and her brace and her cold and for sleep for mom and dad...

  3. We continue to follow you all on Hope For Emma's Heart. Emma is so precious and changing so much. Prayers continue. Love, Kendall and Darla