Mark is going to school two days a week now and seems to be continuing to progress. Sometimes when we change him in his bed he struggles to sit up. We get him up everyday and as the good weather comes he'll be back outside too. At school they are doing therapy with him that will help get up and around. They've even called for new foot braces. Is it even thinkable that Marky will be back on his feet. I know Marky thinks its possible.
On the other hand, his seizures are returning. They seem to be triggered by certain sounds. The two most noticeable are the telephone and the backup beeper on the school bus. Those sounds send him into convulsions with absolute predictability. We haven't changed his meds in over a year and in that time he's gone from terrible seizures ten times a day to none and now back to ten, although these are more the laughing kind than the terrifying kind. It makes me wonder just what those drugs do.
What goes on inside of Mark's head is still a big mystery but that something is going on is very clear. Mark laughs and makes lots of happy chatter. He's back to playing with baby toys, which may not seem like a big milestone, but for much of the past year he was not able to lift a feather.
Today Mark is alive with the sound of music. Lisa, a volunteer who comes in to sit with Mark on Saturday mornings has brought a DVD. Mark follows, or at least seems to. He certainly enjoys the company. Lisa is a very rare volunteer who is willing to come in an spend time with a child who is so mysterious. She is not a nurse so we can't leave the house but she is still a huge help as one of us can go out and get groceries or we can both work on our reno project.
Thanks to volunteers and nurse helpers and Safehaven we are able to keep Mark at home with us. I don't think I need to explain how important that is.
Thanks also to the many who read this blog. This blog is a stream of consciousness, as you read it and connect yourself to Marky's room you become part of his support network too. Many of you pray and your prayers are shaped by your awareness.
Others have supported us financially through the Marky Care Plan - Don Valley Bible Chapel, 25 Axsmith Crescent, Toronto, ON M2J 3K2. This charity plan has helped us purchase equipment for Mark. Currently he needs a portable food pump that will cost $700. Having a portable pump would allow us to make trips with out regard to meal times. It would also mean that we wouldn't have to get up at 5 a.m. to start his morning feed on school days.
Thanks all for walking with us and loving Marky.