One of the hardest parts about having a little girl who is non-verbal is when she’s not feeling well, it’s just a guessing game to find out what’s wrong. My wife noticed she looked a little pale this morning, but it wasn’t until she suddenly threw up at therapy that we suspected something was wrong.[…]
Great day today with a lot of vocalizing at speech and her surpassing her previous performance at PT for a spectacular 6th consecutive week. And after tucking her in calmed her rocking, we decided she would appreciate not being in a crib anymore. So, we converted the crib into a big girl bed and she[…]
I tucked my daughter in for the first time in over a year today. She likes to rock, so tucking her in has been impossible. See: But I used a king sized sheet and tucked her in so tight she couldn’t possibly break free. I even put a weighted blanket on her since everyone’s told[…]
We’re grateful that she can do this. Not all girls with Rett can. It just goes to show that their only real limitations are our own self-doubt.
We’re having a tough time deciding between school options right now. The IEP we got, which is an evaluation from state funded therapists, recommends literally no services for a girl who needs intensive therapy in order to continue to progress. So we’re looking at all of our alternatives. There are three options for us: An[…]
I’m going to keep a running tab of the things you can do to help cure this disease. It’s honestly in our power to cure this. We just need to refuse to concede. And come up with more than four ways to help. I’m working on it. It’s still new to me. Talk about Rett[…]