Tomorrow is Meghan’s annual review for her IEP meeting.
It should have been an easy meeting. Continuation of PT and the paraprofessional until her triennial next year.
The Cowden’s Syndrome clearly warrants PT. We already have 2 sessions a week outside, and THEY want her to receive additional services inside the school.
She hurts, (by her own words)
https://beatingcowdens.com/2013/03/03/moving-backwards/ (This is a link to a speech she gave in school)
all the time. Some days she is just able to make the best of it.
Last week we lost 2 days of school (and work.) We saw 5 doctors, including an ER in those 2 days because of severe pain and virtual immobility in the left shoulder. No obvious trauma. Just the life of a 9 year old with Cowden’s Syndrome.
Cowden’s Syndrome can often be accompanied by hypermobile joints, making injury during daily activities much easier.
Cowden’s Syndrome is also a condition of over exaggeration by every body part. The smallest injury warrants a full, and sometimes incapacitating inflammatory reaction.
We manage a lot of things with Celebrex. But it is not a miracle drug.
We can not keep her in a bubble. She is 9 and wants to run and play.
But, that doesn’t mean her PT needs “don’t affect school function.” They do affect it – in so many ways.
So that is my job tomorrow. To get my point across. To speak for my girl.
Mamma bear is almost ready…
To protect baby bear… She WILL get what she NEEDS!
beatingcowdens 