Wednesday. Physio day. I usually dread Matthew's physio. It hurts him. He hates it. It usually ends with him screaming at me, or hitting his brother or just tears. And always outside of the building. Bless his heart, he waits til it is just us.
Today was different. It still hurt, a lot, but things are looking up. For some reason, he was almost at 90 to start. Last time, it took 20 min of stretching to get him there.
Yay for small steps!
I also chatted with his p/t. Told her I was seeking a second opinion in the US. Told her some of my issues and concerns.
he is relapsing
his surgeon doesn't want to see him until June
his surgeon doesn't think physio is necessary
his surgeon doesn' t seem to have the same concerns about the tall AFO reducing calf muscles
his surgeon seems to be waiting to do more surgery
his surgeon believes in below the knee casting
That last one made an ally out of her. She told me her concerns about below the knee casting based on her p/t knowledge. Made me realize I NEED to get Matthew to some one new.
She asked me who this doctor was and where he was located.
Here is where the world works in strange and mysterious ways. She said "St. Louis? Missouri? I have a friend who is a pediatric physical therapist who works in St. Louis. Would you like me to call her and ask for some information on this doctor?"
My jaw must have hit the floor. Seriously. How small is this world anyway? So of course I said "oh yes please!"
We chatted some more about Shriner's vs Alberta Health Care Out Of Country. She said to keep my options open that maybe there was a good doctor in Spokane that would be easier to get to.
And all the while, Matthew ran in the gym, kicking and chasing a ball. His p/t commented again on how she was amazed at how he can run. Which made me remember... I had meant to bring my video camera and tape his running for another mom of a little boy with a neuromuscular club foot. She has been asking me if, at the age of 6, he can run, play sports, and basically how he functions. I need to video tape him for her. And of course to post here as a proud mommy. I told his p/t that and she said "Oh yes! You HAVE to do that!" Hopefully next week.
When we got home, in the mail was theOut Of Country Health Care forms. Bleck. Lot's of stuff needs to be compiled. Lots of people need to be contacted. I thought it was jumping through hoops. Nope. It is a tight rope walk. And at the bottom it states, submission is not a guarantee of funding. Yay.
Note to self. Check out Shriners.
Then the phone rang. It was Matthew's P/T. She had already called her friend in St. Louis. Talk about fast! She had a bunch of information for me but in a nutshell was this. Her friend did not know him personally, but thought that with his credentials he would be the best person for Matthew to see. That his unique skill set was a beautiful match for Matthew's unique problem.
Now to get us there.
tucked away on a mountain side
4 weeks ago