Getting older

It’s tough getting old. No really………….I have been hobbled for the last several weeks with back problems. The MRI shows arthritis, degenerative discs, stenosis, a herniated disc at L4-5 and a bulging disc at L5-S1. I have what I call “The Lean” where I can’t stand up straight and pain radiating down my leg. Two nerve root block injections later I feel worse than I did before the injections, so I have an appointment with the surgeon next Friday to discuss surgery. Yea.

School is going well so far, Brandon really enjoys the middle school, although the increase in the length of the day and the curriculum wears him out sometimes. He had a small set of seizures last Thursday which left him a little scared. He got really cold and clammy and told the staff that his head and whole body hurt. When they tried to get him up to go to the nurses office he collapsed back down into a chair. He was crying and couldn’t talk when I got there and then we noticed several sets of myoclonic jerks in his arms and legs. By the time I got him home and he laid down on the couch he was feeling better and then 30 minutes later he was playing with Jeremy(who was home with pinkeye that day)as if nothing had happened. Later that afternoon he asked Wendy if he could make a recording of how he felt.

Jeremy has been having a more difficult time, but we made a couple of changes that I think will help. We visited Jeremy’s classroom with some safety glasses that I had modified to give the other kids in the room an idea of what Jeremy’s eyesight may look like, and then asked them to read a book to emphasize how hard he has to work just to see and allow them to empathize with him. We also have pulled him to spend more one on one time with his assistant because he is beginning to realize that the other kids are learning and doing things that he can’t do. This week we decided to pull him out of the afterschool program since it looks like I will be at home for some recovery time. He has really had a good week in class and is willing to do homework at home that he resisted before.

A big thank you to Bob Cook from our church who helped us get a couple of pieces of equipment for the home that will help the boys also. Jeremy has a CCTV that can magnify items and allows him to see what he is writing, he has done his spelling homework using it as well as reading books. Brandon has a Scanner Reader which takes a page of typewritten text, scans it and reads it aloud. If you have a minute he would love to get a letter in Word format that we could print and scan for him!

If you live locally don’t forget about the Take Flight Triathlon next Saturday Oct 18th to benefit Garrett’s Wings Foundation. For details visit http://www.garrettswings.org/event_takeflight.html.

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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