Yikes - poor Grace. They would not put M on "real" pain meds (besides Tramadol) till very recently. She must be in so much pain, poor kiddo
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M was able to reduce her pain medication after the program, so hopefully that will be the case for Grace too. At the one we went to, they say that just the rehab is a treatment and they don't want to change too much at once, so they try not to mess with meds too much. We tried to wean M's pain medication there but it didn't work.
She was able to get off the dose in the day when she got home. Now she just takes it at night (and Tramadol during the day - unless it's a very bad day).
I know at CHOP there have been some very young kids who have done the program. Their parents got to stay too. I'm sure Grace will be happy to have you there! M was so tired that she was quite happy to not have me there
. And she liked hanging out with her friends more than with me :lol:.
I was allowed to spend 4 hours with her every evening/night but she was so exhausted by then that usually I'd stay only an hour or two.
I hope there are some kids Grace's age and she makes some friends. M is still in touch with her friends there. She says the program is like "medical summer camp"
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At the Cleveland Clinic program, there was so much stuff for parents during the day that I was pretty busy. We had meetings with the social worker, a parent group, observed their PT/OT sometimes, meetings with their psychologists - so chances are, you'll be busy.
I asked M if she had advice for Grace and she says "to have fun! And to remember that the first week is the hardest and that she'll be very tired." She also says you should ask if Grace can take a heating pad. The hospital did not allow M to use her heating pad, even though we brought it, because it was "unsafe" (??). She was very annoyed since she uses it every night at home.
The kids also have "school" with a teacher for 1-2 hours a day. M is taking a semester off from college, so she didn't have anything to do and mostly just read. But I'd take stuff for Grace to do, if they have something similar.
Most programs will do a conference call with the child's school after the program is over, to set up their return to school and get them the accommodations they need to be successful (sounds like Grace's teacher is on top of things, so maybe that won't be necessary).
The weekends were also lighter for M - some PT and OT but mostly a lot of free time. We watched movies and played games with the other kids. The other thing is that they usually have to do exercises in their free time at night - that was a struggle for M because she was SO tired by that time.
M was not allowed to do anything high impact to protect her joints, because of the AS. They modified some of the stuff and she was just not allowed to do some things. That's something I'd ask about, especially if Grace already has damage in her knees. M does too (and her hips and SI joints). I was actually quite surprised at how many things they did not allow - for example, jumping rope was not allowed for her.
Sending so much good luck - I hope the program REALLY helps Grace.
