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Hello,
We had a good trip to see Dr. Banwell last week in Toronto, Canada. Luke was hooked up to electrodes for a few days as you can see in the picture. His friend, "Buck" stopped by to visit. Luke was a really good kid all week. I was very grateful for that since it was just the two of us.
The drive there was long but uneventful, about 8 hours. Wow! Its like the audabon there traffic wise! Kill or be killed. I thought about calling a Canadian friend of mine to find out what the "real" speed limit was LOL... You know, in the US you can usually go about 5 mph over but in Canada they weren't paying any attention whatsoever.... either slower or FASTER, like faster than the speed of light!!!
Luke was evaluated by a Behavioral & Cognitive Team the first day. Bad news is that he scored even lower on the disability scale. It's taken him 4 years to gain a year developmentally in some areas, in others there has been 0 gain. They all met with me after we were admitted to the (Sick Kids) hospital and they were so funny. Every one of them was beat!! They said we now know what you mean when you say he exhausts you!! HONESTLY! There were a few that looked like their hair went through a wind tunnel.
We are scheduling a tele-conference with our team of caregivers and all of the PT's, OT's, Docs, Specialists, Teachers....etc involved with our son with the Behavioral & Cognitive Assessment Team and the Nuerologist, Dr. Banwell. Should be interesting! They are going to share their evaluation and discuss other treatment options. We have noticed another change in him this past three weeks. A Lot of eye blinking, behavior problems, imaginary opening and shutting doors talking to people.... oh, and chewing. Everything goes into his mouth.... the TV remote, his shirt, our shirts, blankets.... He also has been rubbing his head.
Luke is into month two of the Avonex shots. Breaks my heart and ruins our weekend. Sometimes his side affects are scary. Horrible body chills, aches and pains, and his apnea monitors & pulse ox show a very high heart rate. Sleeping it goes over 180 to 190's. We do the ibuprofren before he gets it and then later at night. We are grateful that the school nurse is really good about this. We have a hard time giving him the shot. I don't know what we are going to do in the summer. Poor kid, he only gets 2 weeks of summer break and then he's off to summer school. Our insurance doesn't help with nursing.
The weakness has spread up into his upper thigh and trunk area. Although the hands are strong, the trunk isn't. His gait has changed, they call it a Trendelenberg gait indicating hip weakness. This comes and goes. There is a bilateral foot drag with ankle inversion, right greater than left. Basically, now his left foot drags too. :0(
Through this all he is now a big 7 year old! Luke turned 7 on Tuesday, March 2.... He had a good time. As soon as my pictures develop I'll send them over.
Oh and last month, I pulled a muscle again lifting him. The PT found a lump in my back. The Hospital did a ultra sound and it looks suspicious. I am supposed to have surgery on March 15, but will probably reschedule. Can't imagine going through surgery right now and being laid up. Just can't do it.
Laura L
Luke's mom
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