We knew his body would go through a large growth spurt between the ages of 4 and 7. Oh, that couldn't have been more accurate. His school schedule this year has him attending 5 hours a day. His start time, which was moved to a later time in the first place, I know tell people who ask, "He starts at X o'clock, or whenever he wakes up". I have cancelled, rescheduled, and cancelled again so many appointments, plans with friends, and just plans in general that I've lost count. And honestly, I'm just used to it. If you would have talked to me 4 years ago, I would have been angry at myself and the world for something not working out. But, I've learned that life needs to be flexible, and if I have to cancel, I have to cancel.
He has fallen asleep at school a lot this year. He's had several seizures cycles, illnesses, and days where he is just too weak to function. We have had two seizure medication changes already. His sleep his been horrid and without pattern. If you would have asked me a week ago when the last time was that he slept through the night, I couldn't have told you. He was so tired, yet couldn't sleep. This caused him to get bored, and agitated, causing him to continually take his pajama bottoms and pull-up off and pee on his bed. Several times a night. Sigh.
As a parent, I feel helpless. Because for AJ, growing is NOT fun. Several weeks ago I walked into school to pick him up and was lead to one of his classrooms by his assistant. He was sitting on the floor and refused to put his coat on. Anytime we'd try, he'd scream out in pain. Anytime we tried to have him stand up, he's scream in pain. Another day, I walked in to find him sitting on the large rug by the school office. He was in so much pain standing, he wouldn't put his left leg down and bear weight on it. I've had several chats with his school staff about his aggression. He has no other way to tell us he's in pain.
Why so much pain? Because he has cerebral palsy. When he grows, his bone grow, but his muscles don't follow as fast because the brain isn't sending the message that they need to stretch. Insert PAIN. I'm taking him for botox injections regularly now. They are supposed to last 3 months, but with AJ's super-hyper metabolism we are seeing it wear off sooner. He had his last injections (4) in his left leg three weeks ago.
That weekend he spent an entire two days in bed with high fevers and a wicked cough. Have you met AJ? He's like a superball. This is rare. I kept him home from school that Monday and even Tuesday. He felt better on Tuesday, but not well enough to make it through an entire day of school. I thought we'd take a drive, just to get out of the house. Well, the botox had kicked in-add that to his general tiredness and he fell face first onto our driveway. He busted his lip and his top three teeth pretty good.
We spent three hours in the ER-where they did absolutely nothing-and headed up to see his dentist in the dental clinic. He has subluxation. We are now a week out from the incident and still watching his teeth. He's on a soft foods diet until further notice-which has been interesting to say the least-and those teeth are wiggly. We're doing our best to avoid infection and tooth death. I'm thankful they are baby teeth! Our biggest challenge? Well, two challenges. Getting the blasted oral antiseptic on his teeth and limiting his oral stimulation/bite & chew therapy toys. Really hard to do with a child that gets so much organization from his MOUTH!
Two days later he spiked another fever and his cough was considerable worse, so we headed to the pediatrician. Viral bronchitis. Viral won't respond to antibiotics-so, and I quote, "Just let it run its course."
Wonderful. Thankfully, AJ loves honey, steamy bathrooms, and lots of Vicks.
This was all last week. He's feeling better, with his cough just kicking in around dinner time. We're on Spring Break this week and I'm so thankful we didn't have plans to travel. Don't get me wrong, I'd love to be somewhere warm, but some down time was definitely needed. The snow is melted and the sun is shining!
As much as I am in disbelief AJ will be 7 soon, I'm welcoming that age with open arms for my little guy as far as his body is concerned. He's such a trooper. We keep doing the usual regimen, taping his foot and hip, deep tissue massage, vestibular activities, and warm water swimming. I'm a stubborn mama, fighting to keep him away from surgery. We can do it!
I found your blog through "A Deaf Mom Shares Her World." You were the second one so naturally I wanted to check it out.
ReplyDeleteBeing new to your blog, and not knowing what to expect, I have to say - you are a Saint. Life has given you many challenges in your greatest joy and you are doing it.