September 22, 2011

A note from Becky:

The program seems really good, just a big adjustment for everyone. They took a baseline of how much & how they ate from us and from a therapist to establish their goals for the program. They both have similar goals of being able to consume 25% of their daily intake orally, to drink a high calorie liquid, and to be more accepting of different foods orally.

Their day starts at 8am with a vital signs check-in with their nurse. Then they go straight to breakfast from 8:15-8:45, then group playtime untill snack at 10:45, then nap. Some more group playtime/therpay untill lunch from 2:30-3. After the first two evaluation days, the children can not see their parents after the nurse check-in untill after the last meal of the day. The parents can watch the meals through a one-way window. This part is very difficult for Bill & I of course!

They have been very tired. Tenley fell asleep during her snack yesterday and they both went to bed at 6:30 last night, which has now become their bedtime since they have to get up around 6am. They have been showing the therapists all their tricks of trying to get out of eating, so they know what they have gotten themselves into!

Thanks to Orthotic Solutions, Williams' AFOs fit much better & he wears them for most of the day now with no irritated areas on his feet. We have special ordered some shoes designed to fit over the AFOs for him. He has been surprisingly very tolerant of his constraint brace on his left hand. He has been wearing it for a few hours every day. While the brace is on, he really uses his right hand for things, but as soon as it comes off he is back to using his left. The therapists will be taking it off for feeding & napping & putting it back on for playtime.

They will have their physical therapy assessments tomorrow, so we will let you know how that goes.

Thanks Everyone!
Becky Kinloch