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.

12 comments:

  1. You are doing good work every day with this blog!! It's such a tremendous resource. I appreciate learning about issues that affect children and adults with disabilities. Thanks for all that you do!!

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    1. Same here! I rarely blog much but I do pour over blog posts from Ellen's weekly link-up. They are informative and inspiring. I wish I could be like that, but it isn't the kind of person I am. :)

      On a side note: I wonder why I blog or share my son's personal struggles on FB. It's therapeutic for me, but I wondered if it did any good ... until my OB/GYN let me know that she saw in her grandson the same quirks as my son, so her daughter-in-law had him tested. Sure enough, he was given the same diagnosis of Sensory Processing Disorder that my son had at the time (son's diagnosis is now autism). Unlike Ellen or many of the bloggers who share on her blog, I won't make much of a difference in the world of special needs, but knowing that I helped one kid get the diagnosis and help he needed is a great feeling (and what keeps me blogging).

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    2. Sue, thank you so much. Stacey, there is a Jewish saying, "He who saves a single life saves the entire world." You made a definite difference in one family's life...and who knows how many others from your Facebook posts, which are widely seen and also, like blogging, a great medium for storytelling and communicating.

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  2. I'm glad the whole cyst thing can be resolved non-invasively! Doesn't it feel good to be caught up in the good cycle?

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  3. You are doing good work not only for your community, but also for parents of more typically-developing kids who get a insights on parenting a special needs child.

    But about your brace idea. You should devote a full post to it. I'd be happy to pass it around and see if anyone knows anyone who's interested in working on such a thing or if there are folks who already do. I work in a space where people invent plain old physical objects and "smart" objects that interact with computers and technology. Chicago is home to a space called MATTER for medical-oriented startups. I'm sure we're not the only city with such an incubator. Keep putting the word out there. You might find someone who wants to run with the idea.

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  4. That's great that it can be removed noninvasively!! If you ever need a top class ENT for vocal cord specialties, Dr.Christopher Hartnick is someone I'd definitely check out (and that's not only because he's my ENT and an awesome dr)

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    1. So glad you have a great ENT in your life! There seem to be an abundance of them in our area, luckily. We are good for now. There is no guarantee the cyst can be removed non-invasively, but I am glad it at least might be an option.

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    2. Yeah Mass Eye and Ear has great ENT and Audiology departments. That's good. That's great that it's at least an option

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  5. I thought I commented earlier but I'm so happy Ben doesn't need surgery! Atleast not right now. Amazing doctors are a godsend. And I love the community you have built here. It has really empowered me to get involved with disability advocacy and just in the Disablity community in general.

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    1. Kathryn, thank you for letting me know this—I'm truly thrilled. You are so wise and sensible, a real asset to the community.

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    2. As opposed to a fake asset? What makes a person a "real asset" rather than a "fake asset"?

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Thanks for sharing!



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