Adventures with mommy! Pete the cat book launch followed by lunch at 5 Napkins and a stroll in the park (mom had to do minimal carrying of child)
I know these photos don’t depict a child struggling with severe anxiety but she is.
Screaming and crying for hours at night, unable to be consoled in any way, it’s been heartbreaking. And exhausting.
I’ve been in touch with her specialist. We are considering changing her sleep medication. She’s only on one medication for sleep. Clonidine. And am so grateful that we’ve been able to keep the drugs to a minimum so far. Most girls with Rett syndrome are on upwards of half a dozen medications.
Clonidine obviously hasn’t been working so great lately. But I may have found something that has – continuos release melatonin. It never worked for her in the past, but the past two nights she’s been sleeping. Is it luck? Is it melatonin? I don’t know. But I hope we continue with this streak.
Even though last night was a tough one (she may have had a seizure and it made her very upset), today Lily was excited about going to school as it’s ‘superhero’ day.
This kid is MY superhero. Every day. She smiles in the face of adversity. She has fierce determination. She is silly. She is smart. She never gives up. And she rocks a jumpsuit.
Superheroes live in the hearts of little kids fighting big battles. #reverserett
A few weeks ago, Lily lost a tooth and got $5 from the tooth fairy. She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch! You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition. A watch is the perfect accompaniment to this activity, no? She’s so proud of this orange watch.
Earlier today, I got this text from Elaine and it made my heart burst with pride:
It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii… it was so exciting to see!
We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!