How far we have come

I periodically read back through some of my old posts.  It brings back alot of memories.  Some good and some not so good. It takes me right back to what I was feeling in that moment.  I remember exact words of what doctors said, I remember what rooms looked like, what Nathan was wearing, if he was happy or sad that day.   It is amazing how words can throw me right back into that moment.

I realize how far we have come.  Nathan has made huge strides.  Some days it does not feel like it.  We see him everyday,  so the little things are a little harder to notice.  But when I read through this page, I realize he has come SO far.

He turns 11 next Wednesday and is becoming this little man right in front of my eyes.  He is 5’4″ and has the biggest feet I have ever seen on a child.  We are literally buying him new shoes every couple of months. He has developed this really cute sense of humor that makes us laugh.   He loves his sister so much.  He loves us and it makes my heart melt every time he hugs me.  Hugs are hard to come by with Nathan.  He will give you a hug on his terms. Usually a little forceful.   So when he gives you a real, gentle hug it usually brings tears to my eyes for these moments are so fleeting.  I just want to stay like that.  

We have our next genetics meeting on April 8th.  This will be the results of the full exome panel that they did.  They also took me and Jay’s blood.  So if there were any incidental findings we will hear those to.  There is a very real possibility that we will hear that they found nothing and they could have also found what they have been looking for all along.  If they find nothing,  we wait a year or two and try again.  The hope would be that science will know more later.   I would like an answer, but only if I can do something and we have pretty much been told we can’t.   I am torn.  I just have to trust.

We do have some exciting news coming up.  Stay tuned for an announcement soon.

2 thoughts on “How far we have come

  1. so good to hear from you….keep us posted… Big Hug

  2. I love this little man!

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