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Drugs and Other Drugs

Our visit to the neurologist was eventful and helpful. For one thing, she answered the questions about Ben's mobility problems and sleepiness. They are both side effects of the drug Clobazam . In addition, the medication, Doxepin , we are using to help Ben sleep through the night may react with the Clobazam and make him tired during the day. Plan of action - give Ben the Clobazam only at night and give one Doxepin pill, rather than two. If seizures do not occur, we may lower the Clobazam dosage. We also have room to increase Ben's Lamictol , another seizure medication Ben currently takes. We have Plan B, C and D too and they all involve changing doses if Ben has seizures or side effects. I have to keep the doctor informed about his progress. I did bring along my long list of dates with all the changes I saw in Ben since April and she was pleased with all the recording I did. (A star for me.) For the first time, I noticed that the doctor keeps a long list of seizure medication

Glimpses of Ben

For the first week out of school, I jam-packed it full of fun stuff to kick-off the summer. For the most part, Ben took all the goings-on in stride, but mostly he looked bored and tired. Finally at the pool, I saw a glimpse of the real Ben,  laughing and giggling. After finishing lunch, Ben kicked Kim (our long-time friend and community helper) and laughed like it was the funniest thing in the world. Once she caught onto his game, she teased him which made him laugh harder. He was trying to kick her and then push himself backwards in his wheelchair. When Ben slowly inched his foot toward Kim's leg, she'd "yell" at him to stop and that would get him laughing harder. Great fun! Later Kim got Ben to kick his feet in the water and then splash his hands too. I am hoping this is just the beginning of getting Ben back to where he was before the recent seizures. Later the same day, Ben had OT with a brand new therapist. She got to see some of his mischievous behavio

Lose the Training Wheels

Separately, Ryan and I have been thinking about ways to get Ben on a bike ride with the entire family. Once we realized we both had this fantasy of family bike riding, we discussed what was available for Ben - seats, attachments and carriers. The equipment we have seen are simply too small for Ben since they are made for toddlers and young kids. So when Ryan and I had a few hours on our own and happened to be near our favorite bike shop, we went in and hit the jackpot. We were introduced to a program called, Lose the Training Wheels , soon to be called iCan Shine . This national camp-like program is specifically for children with special needs - physical and/or intellectual. With trained volunteers and parents as part of the process, they have had huge success in teaching children to ride bikes. Ryan and I are not convinced that this will be a program for Ben, but we think they will at least have some ideas on how to find something we can pull along on one of our bikes. But who know