February 2012 Update . . . At Last

Potential Update on Aidan’s Blog

During the summer, while on vacation in California, Aidan was very active, riding his adult size trike for long distances, building muscles in his legs, going swimming and being out and about with his cousins. He suffered very few seizures and all in all was doing well.

This changed when he started school again. The pressures of the daily school routine, the colder weather, and not being able to ride his trike, was hard on him. Ice and snow made it impossible for him to be outside for recess since he can’t walk very well under those conditions. When the rest of the students are playing volleyball, he can’t join them. Even at home on weekends, he can hear his friends on the toboggan hill, and the skating rink, but he can’t join them. Winter is not a good time for Aidan.

Just before Christmas he was riding with his dad in their SUV when an oncoming car swerved into their lane and hit them head on with a cumulative impact of about 100 kph. It totaled the vehicle and both he and his dad were shaken up and were taken to hospital in an ambulance. He suffered a cut from the seatbelt that required stitching. At times he suffers a seizure and falls directly on his bottom. Several times this has hurt his tailbone severely and it takes days to recover. Any time he is hurt, the seizures increase in frequency and severity.

Through the generosity and hospitality of some friends the whole Penner family was able to spend a week or so in a beach resort in Mexico over the Christmas holidays. This was a huge positive experience for Aidan. He could swim, and play on the beach with the rest.

Plenty of Mexican Food 

Swimming is one thing Aidan loves, even without Savannah nearby

Swimming in the surf is a bit more risky but doable with his wake board vest on.

Aidan's and his wake board vest (and his dad and sister)

This past January he started having more seizures and the doctors put him on a higher dose of anti-seizure medication. One reason is that he is a growing twelve-year-old boy and has gotten taller and put on a bit of weight since his last prescription.

Aidan has been learning to play the baritone horn in the school band and does well. His left hand is strong and he is well able to finger the valves. He loves to play video games and is extremely skilled at them, even with just one hand.

So what is in Aidan’s future? Here are some things to pray for:

Aidan is getting more and more discouraged and depressed as he becomes aware that there has been little improvement in the past months, and “everything is still so hard”.

Right now Aidan must be accompanied everywhere by a teacher’s aide in school or by a family member at home. He is hoping to get a seizure response service dog to be with him at all times. A trained dog can assist him when he falls, and can alert someone to come and help him. These dogs can cost from ten to thirty thousand dollars, they can also be had for much less through service organizations, but the waiting lists are very long.

He also gets tired easily, usually coming home from school exhausted and ready for a nap even though he has a nap in school every day. To diagnose why he is so abnormally exhausted he will be going into a sleep clinic for a sleep study.

He is scheduled for another EEG to check on the electrical activity in his brain after which he’ll see a seizure specialist.

His right knee tends to over flex backwards which makes walking difficult even with his ankle brace. He will soon be seeing a specialist in gait, or walking disorders.