Wednesday, June 18, 2008

Summer plans.

Rebecca asked in the previous post if Edda's getting any services for the summer. Edda is qualified for ESY - extended school year, but it's not extended by much. It's from July 8th to August 1st from 9 am - noon. Other than that, Edda's going to PT and OT once a week. We are still struggling to find an SLT that we like, but we can barely find anyone who is even willing to take Edda on, let alone find someone superfantastic.

On a fundraising note, I think I have an appointment with Sen. Mikulski's (MD) office next Wednesday at 11 to talk about the $500,000 Rett Syndrome earmark. I don't have an actual appointment with the senator (which I think would have freaked me out to no end), but I think I have one with the legislative health aide, which is better than I expected. I sprinkle the word "think" throughout my last sentence because the legislative aide emailed me and said "Wed. at 11?" and I replied "Great, how do I find your office?" and I've gotten no answer and that was 3 days ago. I wonder if I'm going to bring Edda. It's smack dab in the middle of the work day, but what the heck, she's up for an adventure I guess. What am I getting myself into? Apparently, I'm heading to Capitol Hill.

4 comments:

Brooklyn said...

You ROCK! Edda will love it, or at least they will love her.
Your Extended years kicks our butts. Ours includes 3 (yes 3) 30 minute session ALL SUMMER....that is one per month. Call me crazy but that is the worst extend year ever!

sherah said...

That is so cool. I am really proud of you for doing something so far out of your comfort zone. Talk about great moms!

Rebecca said...

Your extended year is better than ours...Caitlyn will go July 7-August 1 for 1 1/2 hours a day...I'd give anything to double that to 3 hours!! Lucky you!

Rena said...

Call JHU medical center to find some SLT or call children hospital in D.C. to find one.