Hello Everyone!!!
I just wanted to upload this photo. I have been researching awareness ribbons for our girls and couldn't find one specifically for Aicardi Syndrome. So, a very talented artist and I decided to come up with our own ribbon, using the colors purple(for epilepsy), pink (for our girls and their birth parents), and white (for innocence). This tattoo meant a great deal to me, I hope you love it as much as I do!!
Sincerely,
Amanda Morelli-Blanda
(mother of Carson Leigh Blanda)

Anna, now 18, has been sleeping in a tent bed for most of her life. The floor of the bed consists of a single bed mattress (protected by a plastic mattress protector) with the extra space filled in with dense foam rubber which we cut to size with a two-bladed electric knife and covered with sheets and blankets. Although you can't see them in the attached photo, the adjacent walls are padded, so Anna can have a very strong thrashing-type seizure and be perfectly safe (when she's zipped in) as every surface she can possibly contact is soft.

Here are some pictures of the wheelchair-friendly coat Astrid uses. It goes on and off without having to take her chest strapping on and off, so it is easy to open or remove on the school bus if she's hot. It is basically like a regular coat, split right up the back and then tied to the chair. I made it a bit roomier on the sides so that it would wrap around the back of the chair and her to keep drafts out of the sides.

This is what the coat looks like off the chair.

Here is how the coat ties in back.