The Divine Comedy

TV relating to Jack's Life

Global TV Ontario just did a story in June on CME therapy and Teya, the girl whose story promted me to look into CME in the first place: http://www.youtube.com/watch?v=eM0Mk2zHKf8

Also, we met some new families at the Upper Northeast Regional Angelman Syndrome Foundation picnic in July, including a mother and daughter from New York who are going to be on Mystery Diagnosis on the Discovery Science Channel on August 10th at 10pm.

Mystery Solved

Well, we found out last week why Jack keeps getting pneumonias and why he's sick all the time--he's had a chronic sinus infection. He started at least four weeks of antibiotics last week and his dr. will check on his progress toward the end of those four weeks. He may need to be on them longer if it's not cleared up by then.

In the meantime, Jack's getting used to being on his feet again after a lot of downtime with his third pneumonia. Here's a video of him yesterday in his walker. He's really starting to get the hang of going forward in it, though he uses both legs at the same time!

Meeting a new family and more awesome CME

We got to meet a family from one of our Angelman email lists today who live in the area. The similarities between Nicholas, who is 7, and Jack were amazing. It was great to see what things he'd learned in his seven years and be hopeful for what Jack might learn in the future. Here's a short video of Nicholas and Jack playing in the grass, and a few pictures of them.

Jack is doing amazing things!

Ramon got Jack to do some really amazing things today. Besides sleeping well and not screaming through the whole therapy session, which are also amazing improvements, Jack has tolerated standing and "walking" with just support on his ankles. Here's one video from our early session today. You can't see it through the whole video but Jack is walking on two boards turned sideways that have a width of about 3/4" each!!

Toronto is going well

Jack's first therapy session with Ramon went amazingly. He didn't get upset at all and Ramon was great. He was so energetic and happy. He was so great with Jack. In bewteen the first and second sessions, we went to a semi-accessible playground I saw on our way to the therapy office. The playground had partially paved paths, but there were wood chips around the actual playscape. Jack enjoyed a slide for the first time by himself (without me holding him) and a swing, which he always loves. Here are videos of Jack having a good time.







sorry this one's sideways, I couldn't find a way to make it rotate and keep the whole video.

Toronto at last!

We've arrived in Toronto, safe and sound. We're in the same hotel we stayed at for the other two trips so it feels a bit familiar. It is pretty lonely though without another adult, I have to say! After we got in and had a snack, Jack "walked" with me outside of our sliding glass door, then back in. (I held his hands and shifted his weight for him.) Here's a picture of him standing and noticing the camera. Notice he's standing straight with me just holding one arm!!