Balloons, party and a new treatment.

Friday was Edda’s 19th birthday and, though it always brings me a little sadness, it was also mostly a happy day. She went to both school and aftercare and Megan, one of Edda’s teachers, sent me the most wonderful birthday gift as a video. Edda is often not very engaged in activities and because she is limited in how she can control her body, she can not participate in many things on her own. But here she is, in the balloon inflating room (the special needs kids run a little in-school business where they sell balloons and they learn the skills needed to take the orders and fill the balloons, etc), totally entranced by the balloons and actually reaching out to play with them! This purposeful use of her hands is extremely difficult for Edda and it warms my heart that she was able to do this and have some fun on her birthday. She is also in such a great mood in this video.

We spent a bunch a lot of Saturday preparing the house for the annual pancake breakfast birthday fundraiser on Sunday. We cancelled in 2020, 2021 and 2022, and we decided only a few weeks ago that we would hold it this year. We got almost 80 RSVPs, and so we set to work. Most of it was Jeremy as he prepped all the food (pancakes, bacon, coffee, juice, blueberry compote, fruit salad). To host 80 people in the house, the whole downstairs needs to be reconfigured, so I ended up doing most of that. Eliana helped on Saturday with the decorations and Megan came by on Saturday night to help with last minute arrangements.

The morning of, our sous chef came (Shaney – Ginny’s son), who was amazing and totally is welcome to assist any with cooking any day.

Both sets of grandparents were able to attend.

We were able to have some outdoor seating, we lucked out on the weather.

Lauren made the most beautiful cake!

Edda and I sporting matching outfits, lol. I wish I got more pictures, but I did not. The house was full of people and pancakes, we got to see old friends that we haven’t seen for three years. One of the most comforting/exciting things was that we got a good cohort of Rett families to show up. We used to get together more regularly, but it hasn’t happened in a long long time, so it was nice to catch up and see the girls and to chat about the new drug that just got approved to treat Rett Syndrome a few weeks ago, which, based on an informal survey, we are all going to try. We all have some reservations, I will explain in the next post perhaps. It’s a symptomatic treatment for Rett, generally suppose to – as I say – “make Edda 10% more awesome”(to which Mr. Pat, another one of her teachers, says – well that will be very hard because she’s already super awesome).