May 7, 2012

Hello Everyone,

I am sorry for the mass email.  We just got home from our trip to Boston Children's Hospital and  I wanted to give you all an update on Nathan.   You have all been so kind to ask about him every week.   I thought it would just be easier to tell you through email.    

We saw a Brachial Plexus specialist today and all of your prayers must have been working because Nathandemonstrated more today than he has ever done.  There are four key motions that Nathan has to demonstrate to show that the nerves in the neck and shoulder are firing to the muscles.  Nathan has been doing two of them over the past few weeks, but we have not seen the other two.  Just last Friday we were at therapy and we were trying so hard to getNathan to lift his arm in a sitting position and Nathan was not even close to demonstrating this.  He has never shown signs of lifting the arm unless he is laying down. Nathan was completely off his schedule today and rallied to the occasion.  You would never know that this little boy hates to eat or sleep because he was so pleasant for all the doctors.   He was evaluated by four different people over a two hour period today and for every one of them he showed that he could lift his arm while sitting.    We were shocked!!!  It was just unbelievable that today was the day he was going to show us that he could do it.  He demonstrated everything that he is capable of doing today.  That was what was so difficult about this appointment.  If he was not in a playful mood and did not feel like lifting his arm, they could not get an accurate assessment of which nerves were working.

After todays assessment, the doctor does not feel that he needs reconstructive nerve surgery at this time.  That is the surgery that is extremely time sensitive and would need to be done immediately.  With Nathan's feeding problems and recent diagnosis of aspiration, it would be extremely difficult to operate right now. There is still one more movement thatNathan needs to be able to do, but time is on our side.  If he needs the nerve transfer surgery we can do it any time up to 12 months and still get the same results as if we did the surgery tomorrow.  The doctor is very optimistic that Nathan will continue to improve with therapy and not need the surgery at all.  This is a completely different outcome than both therapists we work with suspected as of last week.  We will follow up with the team of surgeons here in Pittsburgh on July 9th and the team in Boston on July 23rd to reassess his progress and make a final decision on the surgery.  I just know my little guy is going to once again show us who is in charge!  

On another positive note, Nathan has not had a major vomit in 6 days.  This is huge for him!!!  He has not gone more than 2 days without vomiting in 7 months.  In addition, he opened his mouth to eat solid foods for the first time today.  For the past several months we have been trying to feed him and he would lock his lips and scream.  We truly believe the new medications are working and hopefully this little guy is starting to turn the corner.  He is still eating very little and not gaining weight at healthy rate, but over time we hope that he is not afraid to eat because he will learn that it does not hurt him.

Mike and I can not thank you all enough for your thoughts and prayers.  Nathan is so lucky to have you in his life.  You are not just part of the studio, you have become part of our family over the years and we have all been through many ups and downs together.  He has no idea how much he is loved and how many people are supporting him.  We are not out of the water yet, but today proved to be a positive step in the right direction for many of Nathan's challenges.  That is all we can ask.

We will keep you posted.  In the mean time...keep the prayers coming!

Beth