6 hours ago
Tuesday, August 30, 2016
Put good out into the universe and it will return to you: I'm a believer
Last week, Max lost his balance in our kitchen and fell on Ben's Jumparoo. He broke it but somehow, he was OK. I was more shaken then he was.
Afterward, I started thinking about what could help make Max more steady on his feet. He may need serial casting again, as it's been a few years. Maybe he will start wearing a night cast again. Ultimately, he could need surgery. I pondered advances technology might bring and I came up with "smart" foot braces that could sense if a person was off balance and adjust themselves to provide more support. Then I started thinking that I should do more to help make life better for Max and other children with cerebral palsy.
I think about this from time to time. Earlier in the year, Michele Shusterman—mom to a daughter with CP, advocate and founder of the CP Now Foundation—started offering a free Cerebral Palsy Tool Kit to people who signed up for the email list. It's an incredible resource and a monumental undertaking and I was grateful to her and in awe and a little, Um, what have I done lately?
Occasionally, though, I get reminders that I am putting good out through the blog and it is being returned to me. The first time I ever realized that was when, years ago, a reader told me that Duke University was doing stem cell infusions for kids with CP. That reader was Kate Leong of Chasing Rainbows, and Max got an infusion there when he was six years old. It happened again last week, after I wrote about Ben having a cyst on the side of his neck.
A pediatric surgeon we saw informed us that surgery was the only option, although it wasn't urgent. A woman who reads this blog emailed me. Her husband is a head and neck surgeon at one of the best hospitals in the country. Would I like for him to look at the ultrasound scans? Yes, please.
He did, then referred me to a top-notch pediatric ENT he's friendly with. Dave and I took Ben to see him yesterday for a second opinion. The doctor said point blank he doesn't like to do surgery on children this young unless it is completely necessary, and relief flooded through me—the anesthesia poses a risk, even if it is a minute one.
The doctor noted that it might be possible to do injection sclerotherapy to reduce the cyst, which is absolutely, positively benign. He also informed us that if Ben had a cold or respiratory infection and the bump grew larger, he'd need antibiotics as the main risk of the cyst is infection.
At some point, we will be visiting an interventional radiologist he is referring us to who can better assess if Ben is a candidate for sclerotherapy. But for now, the baby is fine and it's hard to even tell the cyst is there amidst his pudge.
So here's official thanks to this mom who did the good deed for our family, and for the heartening reminder. Maybe someday I will be part of a nonprofit or do advocacy on Capitol Hill or get a company to make those smart foot braces but for now, I am doing what I can to help Max and other children and youth like him right here, and it is coming back to me and my children.
Posted by Ellen Seidman at 6:38 AM