Taped Knees = Tone

Okay, so I do not really understand it all but here is what we saw today. Ayden Jane's legs are taped which keeps her belly in ('turned on') and results in a very LOUD child. AJ has been great all morning but is talking so loud the other kids asked if her hearing has been checked. Amazingly the stutter is gone (well, back to an average 3 year old stutter). I am guessing the stutter would have resolved on it's own over time, but something about turning on the tone in her body accelerated the process.

At times I think that Ayden Jane no longer has trouble with low tone, but this experience proves to me that there is just an underlying tone issue in Ayden Jane. That she has learned to cope and over come it, but it is alway there lurking as their natural tendency. It is not a strength issue, it is better described as a neurological issue. It is more about signals than actual abilities. More about the involuntary system than about what we actively do. It can be improved by doing more and connections can be laid over time (over a frustratingly long time for some), but it is just something that people with PWS have to work at that just is there for those without PWS. I am really okay with that. As long as it can be improved we will work on it.

We have another big travel day coming up Dec. 4. We will go 4 hours to a soccer game for Noah and then home again in the same day. We will see how it affects AJ. Jen will help me brainstorm some ways to keep her tone turned on during the trip.

We had a great Thanksgiving Day. Gary and the kids played outside for much of the late morning and early afternoon. AJ then took a great nap and was ready for supper when it was time. She had turkey, carrots, green salad with almonds and a baked apples and walnuts concoction. On the table and enjoyed by all were also mashed potatoes and stuffing, but Ayden Jane was very happy with what she had. It was quite stress free. When we headed for desert, we gave AJ a bit more apples and walnuts but topped it with about 3 tablespoons of plain vanilla ice cream. She was thrilled! So far, family is slowly changing toward AJ's diet and AJ is accepting of, "no you can't have that, but you can have_____".

So a bit of comedy to end the day. I told Ayden Jane to take off her socks, shoes and pants and put her pull up on for bed. She went to the bedroom to do so and came back very proud of how funny she is with 4 pull ups on. Even way past bed time on a crazy day the kid is doing everything she can for a laugh.