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.


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.