Monday, February 02, 2009

WHAT THEN?????

So I called the Dr. to see if Brynn's test result for Retts came back . After the girl helping me put me on hold for 5 min three different times, I started to think, Oh it must have come back positive and she doesn't know how to tell me. I wanted to say, "look- this isn't a surprise to us or anything so just spit it out already." So you can imagine the confusion as she said, there seems to be no abnormality present based on the test result. -Hugh????!!! So here I am thinking that finally we were going to get answers, you know have a tangible real live name for what Brynn has. Nope back to square one. Her aid at school suggested Angelmans Syndrome. So of course I spent hours reading about it. And of course she seems to fit the criteria pretty darn well. That is the frustration-so many symptoms over lap for all of these conditions. I just called the Dr. and asked the nurse to ask the Dr. to order the test so we can have it done before her next appointment in March. I figure why bother going if there just going to tell me what the girl on the phone just did. These appointments and tests aren't cheap ya know!
So I'll keep you posted. We already feel like she is a little angel, so maybe it is Angelmans syndrome :)

4 comments:

Abyss said...

Wow, how frustrating. They also keep changing the spectrum disorders- the ranges are so broad... When Thea started Kindergarten I realized just how much of an advocate we parents are for our children. You must feel that 10 times more than I do.
You are such a great person, and always have been.

The Partial Godfather said...

At least every time I go in with a problem, I get an answer as to why. I can't imagine how frustrating it is for you. At least she has strong parents to get her through life.

Unknown said...

Hey woman!
It's been way too long since I've checked in on you! Love that you have some photos of you on here... way down the posts!!! You look so great!
I'm sorry about the frustration of not being able to have a diagnosis. Just enjoy that angel! You guys are great!

The Adkins Family said...

I'm so sorry. That must be so frustrating not knowing. What's the plan?