Tuesday, January 3, 2012

December Updates

We didn't see too many doctors in December, but I thought I would fill you in on the few that we did have.  Bryce gained back the weight that he had lost, so we do not have to alter his feeds this time, which is always nice.  We go back in two months for another weight check.

Bryce and Annalise both had eye appointments and found that both of them are slightly near sided.  This isn't a huge surprise considering both parents spent many years in glasses!  Annalise also has an astigmatism and is just slightly near sided.  They said that nothing needs to be done right away, but we will need to watch  that because she will most likely need glasses in the future.

Bryce's eyesight is a little worse.  The opthamologist said that if he was needing to read a chalk board or something, then they would give him glasses now, but we are going to hold off since he doesn't really need to see far for now...oh, and the fact that he hates having anything on or around his face!  The doctor said to just put him up close to the TV  :)  I have to admit, John and I both thought the doctor was a little odd, but that's okay.

The good news though is that there is no sign of any of the eye issues that often come from the  Leukodystrophies in either of our children!  So, although the near sidedness reminds me that these little ones aren't immune from the normal, everyday issues, their overall eye sight is still good!

Today I got an email from the neurologist letting me know that the doctor here in the states also did not find any deletions.  Dr. Narayanan has officially diagnosed them with Aicardi-Goutieres Syndrome (AGS5) because he strongly believes that's what it is. However, he did say today that he obviously has more work to do.  I'll keep you posted!

Oh, Annalise also got some new AFO's that she is really not liking.  The tightness and spasticity in her legs has gotten worse so these will hopefully help stretch her and keep her off her toes a bit.  Unfortunately, she seems to be in pain a good part of the time now, so she is now on pain meds a couple times a day.  I'm sure she will be starting baclofen soon.

I hope everyone had a wonderful Christmas and Holiday season.  Our hope for 2012 is a true, sure diagnosis and a cure...that isn't too much to ask for, right?!

1 comment:

Dacia said...

A true diagnosis would be wonderful! I hope the New Year is full of joy for you, and your family.