Friday, February 12, 2010

Long Overdue, Lots of News

Some cuteness from my boys right off the top :)

On to other news....

Lots of progress with Joey. He is using a new walker at preschool and when he is in the mood he can really get going. As usual it's a motivation thing with him, and like his mother he also needs to be very well rested to be cooperative. We did manage to get some great video though, which I will post soon.

Joey has made some gains at preschool with his peers as well. Although he still eats mostly purees he has eaten snack with his friends, when the menu is applesauce or yogurt. Twice now there have been chocolate cupcakes and Joey has taken a few bites...he doesn't chew, but sort of sucks it off the spoon, sucks it in his mouth to sort of melt it down and then swallows, but it's a start.
He also did something pretty amazing this past Thursday and I am so grateful to his wonderful teachers who immediately grabbed the camera and documented it for us. He was scooting around on the floor as usual, playing with a truck, when it suddenly hit him that some of his friends seemed to be doing something fun at the tables, so he moseyed on over and pulled himself up to play at the table!

What I love most about those pictures is that he looks just like all the other kids. It's so heartwarming as his Mom to see him looking so "normal".
Last week I registered Joey for kindergarten. ~sniff sniff~ I can't believe my baby is going to be 4 years old in less than 2 months, and will be starting school in September! Our local school was one of those chosen to be the first to implement full day, full week kindergarten for 4 and 5 year olds in Ontario, which works out well from a daycare perspective. The school will be offering before and after school care on-site so he won't have to move from school to a different location for daycare until I am finished work.

The registration itself was much better than expected. Joey was at preschool so I went with Ben, who was extremely charming and flirted with everyone. I am in love with the school, so clean and modern while still quite small. All of the staff I met were wonderful, the other parents registering kids for kindergarten that have older kids at the school were all telling me how wonderful it is. The special education teacher, Mrs.B, spent over an hour with me and I was very impressed with the facilities they have for students with special needs. I also appreciated her attitude...after asking me about his disabilities and what accommodations they will need to make for him she then spent lots of time asking about who Joey is aside from what he *can't* do. She asked what he likes, what he's good at, how he can best be comforted when upset. It made me feel good as a parent knowing that she cares about him as a person, not just a disabled kid. So the next step is to bring Joey for a tour, and Mrs. B. welcomes us at any time, and as often as we'd like. It's literally a 5 minute walk from our house so I'd like to get Joey over there often before September.

Now for the bad news...Joey has developed seizures. We had noticed a strange thing Joey would do once in a while, he would sort of make a humming noise, his muscle tone would decrease and he'd drool more than normal. At first we thought it might be another one of his unusual sensory-seeking behaviours, and it only happened very infrequently. Over the past few weeks Jason and I noticed a marked increase in frequency and started to wonder if it was a controllable behaviour or seizure activity. This morning it happened while he was in his high chair for breakfast and he slumped right over and put his head on the table, and his eyes sort of closed and rolled back a little bit. I called our nurse practitioner just to leave a message, hoping he'd talk to our doctor on Monday when she was in next and they could let me know what to do, I wasn't overly concerned. He was immediately concerned and called our doctor at home. Our doctor wanted us to go to the hospital immediately to meet with the pediatrician on call, who happens to be our regular pediatrician (Dr. K.) anyway.
After describing to the Dr.K what Joey's episodes are like he is positive they are atonic seizures, will likely continue to increase in frequency (they've gone from maybe 1x/week 3 months ago to several times a he's had 2 already) and as he learns to walk there are increased risks of injury from falling. He suggests starting medication right away and has said that he's not overly surprised at this development because Joey already has neurological issues going on. He said he would have been more surprised if we had made it out of childhood without seizures developing. He basically said it's very likely Joey will need to be on meds for the long term, like well into adulthood. And these meds are 3x/day...blech. To date Joey has never needed medication for anything other than Tylenol :(

So he gave us a prescription for Epival (Valproic Acid) and has set us up with an EEG on the 23rd. Tonight Jason and I were discussing whether or not we want to start medication, and of course we were second-guessing what we've observed and wondered if maybe it's NOT seizures. As if he was listening to us Joey proceeded to have a seizure while standing at the couch, and fell straight backwards, banging his head on the floor. That pretty much sealed the deal for us, we'll be starting the meds in the morning.

There's more to update, and of course my little Ben has many honourable mentions, but it is late and we have a long first day of new medications ahead of us tomorrow so that's all for now.
- P, J, J & B

No comments: