I haven’t been posting enough on the blog lately. I’ve written several posts and then been vetoed by the family, which is cool with me. I am not going to publish anything that they object to. There’s more to life than the blog.
One of the many things I haven’t posted about is Caleb. Somewhat that is because he isn’t doing anything too spectacular. I was spoiled – those first few years had a meteoric trajectory of progress for him. It’s been 4 years since we first met him. He was non verbal, hardly moving, and was considered legally blind. It’s crazy now to think about that.
This last week, he had an evaluation with his speech therapist and he scored out to be in the normal range for his age. Therefore, he no longer qualifies for speech therapy. We are very sad to see Miss Beckie leave us. We’ve seen her twice a week for three years now, and she is wonderful. She has taught me so much. I am a much better question asker of all of my kids after watching how she draws information and conversation out of Caleb. Caleb still is hard to understand when he gets excited and has a typical Cerebral palsy tilt to his speech, but he speaks very well now. He jokes – badly, but he jokes. (“Knock knock! Who’s there? Doctor Who!!!”) He is really enjoying his Groucho Marx glasses. He sasses. He’s singing the alphabet song, learning some Bible verses, and can count to 30 when he wants to. He told me last week that he felt “ill” and that he smelled an “odor”. So he’s come a long way. We are grateful for his progress.
At the same time, we’re not seeing the work ethic he used to have at physical and occupational therapy. He’s grown a bunch, and growth = trouble with cerebral palsy. He lost his center of balance, and his muscles got tighter. He outgrew his TAOS walking system, which I figured out when he flipped onto his side in it- evidence of some very strong thigh muscles. He complains and fights PT some days. Other days he’s a trooper. We are working with him daily doing electrical stimulation to build muscle mass, and that is paying off. He is getting stronger. He is less likely to buckle at the knees that he used to be when using his walker. He is able to use the walker more independently, but still is distractable so he needs a “spotter” with him so he doesn’t tip or run somebody over as he is going. The improvements we’ve seen over the last 6 months are small – he can control his foot movements a little better, and his affected hand is more capable than it was. He’s able to take his shirt on and off by himself. That’s a tshirt or sweater – not buttons. He’s able to wash his hands, and he writes his own first name now. I’ve heard him lying in bed trying to fall asleep, saying the letters of his name out loud to himself. He asked me how to spell a friend’s name so he could write it down later. Which he never did get around to doing, but it’s good that he is thinking about it. He’s stuck in the wheelchair and the walker. I was really hoping he’d be further along in his walking skills by now, but it is what it is. If you’re of the praying sort, pray for his balance and his walking.
So there’s progress, and there’s struggle, and that’s all to be expected.
His overall health is improving – no need for breathing treatments this school year at all, and his epilepsy is under control with medication. He has acid reflux that seems to be getting worse, and is not responding to medication well. Therefore, he goes into the hospital on Wednesday for an endoscopy. Hopefully we will be able to find out what his issues are and how to help him feel better. It is interesting to me that hauling a kid to the hospital is not all that out of the routine for me, but it would have been a big deal to me ten years ago if one of my older kids has gone in for a procedure like this one. Both parents would have taken the day off to bring him and wait it out in the hospital. These days, I will take him by myself and Paul will deliver the other kids to school. The challenge is not dealing with the medical stuff, it is dealing with keeping the whole ship afloat with the schedule change.
All of this is the details, though. When you look at him, overall, what is obvious is that he enjoys his life. He loves friends, riding horses, and his school and home. He has a friend at school that he chats with, fusses with, and enjoys. They got into a spat about if they were going to play house or school at centers time at school, and that’s the stuff of real life. We got Seaworld passes for the kids for Christmas, and he LOVES it. He rode the kids roller coaster over and over. He has a serious need for speed. He’s desperate to ride the Journey to Atlantis, and spent an afternoon with Paul watching youtube videos of roller coasters together. Hr can’t wait to ride the Great White and Steel Eel. He’s an adrenaline junkie. Who knew?