Many of the chemotherapy drugs Jackson took had serious side effects. There was nothing we could really do about it – he needed the chemo to live, and we had to take what came with that.
I have to stop and say that Jackson is very, very lucky to be where he is today with as little side effects from treatment (thus far) that we know of. I am NOT complaining.
His heart is good. He has both kidneys, which function well. He still tops the charts for height and weight for his age, despite radiation and chemo. His scans reflect normal post-surgical changes – lungs, bowels, etc look normal. He’s missing an adrenal gland…well duh…has a hypersensitivity to vaccines, high frequency hearing loss and most recently, chronic tummy pain/issues.
Considering what we put him through, these are just little blips on the radar.
At the time, each hearing test we did over Jackson’s treatment was depressing. They got worse and worse. It was so disheartening as his mother, because it was kind of like getting kicked when you’re already down.
Today I don’t even think about it as a chronic issues insomuch as it’s just part of who he is. Jackson can hear conversational tones just fine, but it’s the high frequency sounds, especially in a crowded room, that are tougher for him. That’s why school, reading and spelling have been an uphill battle for him. Because of his hearing loss, he has to work harder to concentrate on what’s going on and what the teacher’s saying, as well as learning about what they’re.
If you read my blog consistently, you’ll know it’s been an uphill battle getting Jackson what he needs for school. Well, I’m so excited to announce that after a year of persistence, Jackson now has a 504 plan in place that INCLUDES an FM system. It’s brand new and paid for by the school system; he starting using it in class this week and he says he really, really likes it.
Score one for mom!
With Jackson’s hearing loss, the tricky part in the beginning was that Jackson lost his hearing before he learned to talk. But if you’ve been following these photos, you know Everett and I by now. We researched and talked it over with the doctors, and decided to go ahead and get the hearing aids and enrolled Jackson in weekly speech therapy in the midst of immunotherapy.
When he’d feel good between treatments, we worked on it. When he didn’t feel good, we paused. He had a fantastic speech therapist and audiologist that looked after him well.
Today Jackson can talk the ears off a bunny rabbit and you can’t tell from his speech that he requires aids. Crazy to believe his aids are now 5 years old!
In this photo, these were the first loaner aids we got. It was right around Thanksgiving 2009. Jackson picked the colors for his molds and he loved that you could see them from a mile away. Oh my. They were…bright…FOR SURE.
His hair had just gotten long enough I thought I’d try some product on it while he was eating his dinner. (Nope.) I believe those are tater tot teeth on that silly-faced boy.
He was eating, happy and could hear his cartoons just fine. At the time, just fulfilling Jackson’s basic needs and making him happy fulfilled me.