Nicolas and What We Learned from Dr. Walsh

All our doctors at Riley have been wonderful but Dr. Walsh just might be my favorite.  He was very patient and listened to all our concerns and while being extremely compassionate answered the things we wanted to know but not necessarily hear.  Jake and I knew going into this meeting that at this point there isn't going to be a miracle drug and that the cause (if any) isn't going to bring all good news.  On Tuesday someone finally gave us some answers and while not definitive they give us a place to start.  We will continue to hope and dream for more.  

Dr. Walsh said that the longer we go without knowing the cause the more likely it is that we won't ever know...and at this he felt that there is a 20-30% chance of us knowing the cause.  On the plus side, he said that regardless...treatment wouldn't change.  So we know that we are doing everything we can for Nicolas.  Dr. Walsh feels that this is a genetic issue.  He ordered blood work to test 3 different genetic possibilities (none of which are degenerative).  The results will take 4-6 weeks to get back.  

As for Nicolas' development.  Dr. Walsh said statistically speaking Nicolas is not likely to walk or have full use of his arms...AND that he may develop some head control, social smiling, social sounds, and tracking.  Due to the severity of his delays along with the infantile spasms children similar to Nicolas have a 80-90% mortalilty rate by the age of 10.  Most of this is due to illness and their inability to fight it.

As for the muscle biopsy, he recommends that we wait until Nicolas is 2 years old.  Waiting until he is two allows them to get a better muscle sample.  Even though we wait, knowing whether he does or doesn't have a muscle disease wouldn't change his current treatment or their opinion of his possible outcomes.

What we asked for was statistics and thats what we got.  It is important for us to remember that this is not the final say for Nicolas...it gives us guidance for our prayers.  God is mighty and powerful and with us always.  Only time will tell what is in store for Nicolas.  BUT his life is precious and it will be wonderful.

We will hold him, kiss him, and tell him each and everyday just how precious he is...and thank God for this precious gift He has given us that has blessed us in so many ways.  Thank you for your support and prayers.  He does hear us and He knows our hearts!

As said in Gratitude by Nichole Nordeman....

Oh, the differences that often are between 

What we want and what we really need 

So grant us peace, Jesus, grant us peace 

Move our hearts to hear a single beat 

Between alibis and enemies tonight 

Or maybe not, not today 

Peace might be another world away 

And if that's the case . . . 

We'll give thanks to You 

With gratitude 

For lessons learned in how to trust in You 

That we are blessed beyond what we could ever dream 

In abundance or in need 

And if You never grant us peace 

But Jesus, would You please . . .