My parents are on their way down for the weekend.  Matt and I have an IEP and placement meeting tomorrow morning for Waverly.  I usually do these meeting by myself, but I will need his help with this one.  We are hoping to get a one-on-one assistant for Wavey at school and I think it may be quite a fight.  Matt is much better in this situation, than I am.  I don't like to cause trouble and Matt does (he is a former attorney!).  Oliver also has a doctor appointment in the afternoon, so it is going to be wonderful to have my parent's help.

This has been an emotional week for me.  I think the seizure was the reminder that this terrible disease continues to bring changes.  Wavey's poor little brain is being destroyed by the GAG buildup and the seizure was evidence of that.  She is having so much difficulty staying on her feet.  When she walks she leans forward so much that it causes her to stumble.  It is difficult to find the balance of wanting to keep her moving and on her feet, while also keeping her safe.


Misty said…
I am so sorry for the rapid changes that you are seeing in Waverly, I know that it is deeply painful. They have these contraptions called gait trainers that help the kids with balance. You may want to check into that for her safety. There have been posts about them on the forum. Thinking of you all always, Misty
Hi Shannon,
just wanted to say that there are many people out here praying for you and your family. I am a SPED teacher here in Oregon and I know how difficult it can be to attend these IEP meetings when all the "experts" try to tell you what to do. Just remember, you are the expert when it comes to your children. You know and love them more than anyone else. Stand your ground. The "experts" will come around :)
Anonymous said…
I just want you to know what an amazing resource this blog is becoming. I know it's a way to keep your friends and family updated, and hopefully is an outlet for you, but you have a wonderful way of writing that really speaks to people.

I know it can't make your path any easier, but please do know that by writing your story, you will help so many others.

Thinking of you.

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