I am long overdue for an update. I have been a horrible blogger lately but the kids have been sick, I've been sick, and I just haven't felt like blogging.
This week we spent 3 days at a rehabilitation centre (1.5 hours away) having Ben "assessed". We waited a year for this to happen. Right after Ben was diagnosed, I asked for Ben to be referred to this rehab centre (after consultation with his PT's). Up until now, there has been no one officially in charge of his case. He was diagnosed 14 months ago by a pediatric neurologist at a Children's Hospital 2.5 hours away. He has seen this doctor once since for a grand total of about 1 hour. His pediatrician seemed to think that he should be in charge of Ben's care. I completely disagreed. Although he may be very knowledgeable in some areas, he doesn't have a clue about CP treatments / alternatives (he had never heard of horse therapy until I mentioned it to him). Anyways...I'm rambling here.
So we finally got our appointment to take Ben to be assessed. All I can say is that these 3 days were awesome. The therapists, doctors, admin people were all fantastic. The facility was great. And Ben was just amazing. He was the happiest little guy for 2 of the 3 days (the last day was a little rough). He did everything they asked of him and more.
Over the first 2 days, they administered the Bayley Scales of Infant Development. This was basically a series of tests in order to assess his cognitive, speech (receptive and expressive) and motor (gross and fine) abilities. I was not really concerned with Ben's cognitive or speech abilities but it was still great to have them assessed.
He did awesome (did I tell you yet that he did awesome?). I'm sorry but I just have to brag about my boy. Here are the results:
Cognitive - at a 30-month age level
Receptive Speech - at a 29-month age level
Expressive Speech - at a 22-month age level
Fine motor - age appropriate
Gross motor - at a 10-month age level (which we already knew since he can't walk or stand on his own).
At the end of the 3 days, we finally had a real meeting with the physiatrist. She seemed really great and reiterated what the therapists had told us. Ben is doing great. What we're currently doing for him is great. And that she's going to include him in her "Spasticity Management Clinic". Fantastic news. Exactly what we wanted to happen.
I have to say that I really liked her approach to everything. When explaining what she does she said "my focus is on mobility, not walking and on communication, not talking". Obviously if walking and talking are realistic goals then she's all for them. But I just liked how she explained this to us.
We also had some really good discussions on Ben's future and our goals for him. It was probably the first time that I really thought about what I want for him. After some thought, I came up with these:
When Ben is an adult, I want him to be independent. That may mean that he walks (with or without assistance) but that may mean that he needs to use a wheelchair. I'm OK with that. BUT if at all possible, I want him to be able to WALK SOME. Enough so that he's not limited to only "wheelchair-accessible" places. His private PT explained it like this "If Ben wants to he's going to be able to go to university and he may need to use a wheelchair in order to get to class on time and carry his books. But you want him to have enough walking ability such that he can socialize with his friends and get to all the places they're going (such as a bar which are sometimes up a flight of stairs or down a flight of stairs)."
My second goal is a bit shorter term. By the time Ben goes to school, I want him to be able to get in and out of the house on his own. And in and out of the car on his own. I'm already struggling with carrying him everywhere. And he only weighs 26 lbs. What am I going to do when he weighs 50 lbs?
So that's it. I have many more thoughs swirling around in my head after this this week (and a few more blog posts). But those will have to wait for another day.