Day 3 of "A Week In The Life of Blake"- Wednesdays are school days- She's in a program at Vandy which is about a 50 min-1hr commute from our house in morning traffic. We try to let her sleep as long as possible. I get her breakfast ready with all her supplements, while Ben gets her up. Picture 2 is everything that goes in or on Blake throughout the day--Breakfast, Lunch, Dinner and in between. Her body has nutritional deficiencies that we compensate for via supplements, protein (not pictured) and vitamins.
She is also on a Gluten Free/Casein (milk) Free, mostly organic diet. She only takes one form of medication - Low Dose Naltrexone cream at night (not pictured) to help with her "hitting". Part of Rett is uncontrollable hand movements or self-injurious/repetitive behavior. Blake hits herself in the mouth with her left hand. Some days are better than others, but it's particularly bad when she's tired or anxious. That's why you'll see an arm band/splint on her from time to time. Her hitting is very distracting to her, so we splint it when we can. Since she started the Low-dose Naltrexone cream, this behavior has significantly decreased, so we are thankful for that! Most of her supplements are compounded specifically for her and are shipped to us. We got a shipment today actually.
We also give her a Methyl B-12 injection daily -- we've seen significant improvement in her overall health, endurance, attitude, and attention while on MB12. Stinks having to stick that little booty everyday , but she takes it like a champ. She's so tough. Today, we had another meltdown when I tried running a quick errand after picking her up from school. We got to the car and within one minute of pulling away, she was OUT again. Poor thing was pooped. (I don't think she got her nap at school today.)
She cannot feed herself using a spoon or fork (working on it in OT though) so after Ben and I feed her the non-finger food dinner (tonight it was GF organic quinoa spaghetti--she's a pretty good eater thankfully) , we try and work on finger-food self-feeding with her right hand to keep up that skill. She struggles to pick up the veggie straws, and sometimes she misses her mouth. But we keep putting them in front of her and she keeps trying. (I'll post the video after this, so you can see)
Ben has her walk up the stairs each night too, so she keeps that muscle memory and builds strength in her legs. It takes her a very long time. After bath, we used a therapy wedge to work on weight-bearing through her arms and walking herself back to a standing position--she doesn't like this exercise but she did it! After a few of these reps, she walked over to her bed and stood there . She was telling us she was done and it was bed-time! Sleep tight my little fighter!
Day 3 of "A Week In the Life Of Blake" continued. Here is a video, as promised, of her working on picking up veggie straws after dinner. You'll notice her pause sometimes, because she is holding her breath. But it's not like you and me holding our breath. The part of her brain that controls the exhale you and I do naturally, is affected. So it's kind of like she has to tell her body to exhale. This is a relatively new symptom for her. It's very distracting and very hard for me to watch, honestly. Just another thing (breathing irregularities) that our Rett girls deal with daily.