Saturday, July 12, 2008

Lessons from Joey - Part 2

It's a little but very valuable don't need expensive toys to have a great time! Here's a few video clips of Joey getting hysterical over an air-inflated frog that we use as an ottoman in his room:

It doesn't take much!

- P, J & J

Wednesday, July 9, 2008

Case Closed

Today we made another trek to Sick Kids hospital in Toronto to meet with Dr. M. to review the latest genetic test results. He has basically told us that since he is a neurologist who specializes in epilepsy and Angelman Syndrome he doesn't feel it's necessary for us to continue to see him. At this time all of the neurological tests available have been performed with normal results, so he has referred us back to our pediatrican for follow-up. This brings some relief to the hectic schedule we've been dealing with over the past few our file is closed with both the geneticist and the neurologist. It's a welcome break from the search for a diagnosis, and after what we've been through over the past few months think it has taught us to be happy for what we DON'T know and that having a diagnosis will not change Joey and what he is capable of. We have to focus on the positives; Joey has never regressed or lost any skills and he is HEALTHY. Going to Sick Kids so often in the last little while, seeing children with no hair from chemo treatments, and little babies who can't breathe on their own...well, it's enough to make us thankful for our healthy little boy. No abnormal tests, no medications, no surgeries...these are all amazing and wonderful things. So our quest to label Joey, which is something I think all parents of a special needs child go through, is over. His official diagnosis of "Hypotonic Cerebral Palsy" will remain as is, which we've always known was a very generic label that will enable us to access services and funding to help Joey develop and grow.

So on to our next battle....Joey being denied access to nursery school because "his needs are too great" in order to participate in activities with other kids his age. At the time this happened we were right in the thick of the whole Angelman confusion, so I didn't have much energy to deal with it, but as September looms and it becomes increasingly obvious that Joey doesn't spend nearly enough time around other children and is actually frightened of them, we know now that this is a priority. I have placed some calls to nursery schools to confirm this is what they're telling me, but I know that I understood correctly the first time. I was told that Joey's needs are too complex (not being able to walk, not being potty trained, not self-feeding) in order for him to enroll. I completely understand the limitations of staffing and the safety issues, so I offered to provide a one-on-one mediator to attend with Joey, at no expense to the nursery school. The answer was still "no", because if Joey had his own adult to work with him it would be too many adults, and if they did it for us they'd have to do it for everyone. Ummmm...yeah, and what's the problem with that exactly?! So calls have been placed, I'm asking for things in writing and will be taking this to the Human Rights Commission of Ontario and will lodge a complaint if necessary. NO ONE WILL TELL ME MY CHILD CAN'T DO WHAT OTHER KIDS DO. Period.

On a much happier note, Joey also had his first encounter with the slide at the park. It started out a bit rocky but ended positively!

He wasn't too sure at first

"Who the heck are you???"

All smiles at the end :)

And now that all of our gates are up and fully operational we haven't had any more Joey vs. Stairs incidents, thank goodness. He actually finds the gates amusing:

Other news:

Joey is now kneeling all the time, and can pull himself into this position himself. He will kneel at the coffee table or the couch and reach up to grab his toys.

His eating is on a little bit of an upward swing, but not much. In my never-ending search for high-fat-and-calorie purreed food to introduce to his diet I came across Macadamia Nut Butter at the health food store. Ten bucks a jar, it has TWENTY THREE grams of fat and TWO HUNDRED TWENTY calories in two tablespoons. So of course it is off limits to Jason and I! Joey has eaten it a few times mixed with pureed mango or pineapple and so far seems to like it. Sure beats peanut butter with it's measly 8 grams of fat!

We got a new stroller for Joey that supports proper posture so much better that we don't even need to use his special seat liner anymore! Joey's wonderful PT Jennifer checked it out on Monday at our last session and was very happy with how supportive the stroller is for him. And I like the funky red colour :) Pictures to come soon...

That's all for now. Hope you're having a great summer so far, we're certainly enjoying our first entire season with central air conditioning!

-P, J & J