Grace’s specialist called last night and asked to come over this morning (so naturally, Steven and I were up till 1am cleaning!) She’s so so lovely and she came over because she hadn’t met Steven at the initial diagnosis appointment because he was at Jack’s school nativity show. We talked about lots of things and I asked questions I hadn’t thought of before.
Q. Why do some RS girls have feeding tubes?
A. Because they can’t keep their weight up through normal eating and that’s just something we will be watching closely for Grace. She said to add a third whole milk feed everyday to keep her in the right weight.
Q. What does she think about her RS patients’ ability to understand the world around them? Does Grace understand things?
A. They understand one-word concepts (their name, ‘no’, ‘yes’, ‘food’) but not sentences and no understanding about the world around them.
Q. Do any of your RS patients speak?
A. Some of them can say one word, but none of them communicate
She reiterated that Grace is unusual from any patients she’s ever had with RS because she is so floppy and the neurological investigations are still moving forward.
The head of physical therapy has asked to see Grace at her appointment on the 13th and they are aggressively planning her therapy.
Grace is ’speaking’ loads and has started letting us know when she’s upset and even threw a temper tantrum the other day which was beautiful. I never thought I’d say that!