Neck

So as most of you know, Tristan has had neck problems since day one.  He has been in physical therapy since he was two weeks old.  He has had botox, x-ray, MRI, and a TOT collar.  Sadly, even with all of this, nearly two years, he is still tilting.  He can hold his head up, but when he zones out, is tired, grumpy, sick....he reverts back.  And some days he has very little control over it.  Which means bad balance, lots of falling over and lots of hitting his head.  That's not good.

I took him for his follow up with Dr. Gooch yesterday, the one who has done his botox injections.  Nick and I had been talking about it, wondering what the next option was, and I was pretty sure they wouldn't do botox a third time.  So what is the next step?

Surgery.

Well, if the surgeon says it will help.  Dr. Gooch said she has only ever had one other patient she has had to refer for a surgery to lengthen the problematic muscle, but it was a success.  His physical therapist said he would classify Tristan as in the top 5-10 percent of worst cases possible.  He himself had never seen anyone as bad before.  Not so great news for our poor little guy.

We got Tristan set up for a surgery consult in a month and a half up at Primary Children's.  I guess there are three surgery options they would try, some more invasive than others, but all generally have a pretty good outcome.  The problem is post op recovery and therapy.  Which means lots more physical stretching and exercises, a next brace for 3 months, and being in traction for the first 24-48 hours post surgery.

I mean, I know things could be worse.  Tristan could have been born with spinabifida or palsy or something. Lots of kids have it much worse.  But at the same time, I don't believe in belittling anyone's pain.  Sure, everyone has something different ailing them, but that doesn't mean we should make it any less than what they are feeling.  And my little guy has been through a lot in his two years, and I know it hasn't been fun for him.  At least though we are getting it taken care of when his is young, so hopefully it won't scar him too badly.

Waiting to see the doctore in the nice childproof lobby

Long day, he actually fell asleep on the way home from SLC