Reinforcements

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.