Zachary is the only known documented child case with Superficial Siderosis and was diagnosed at the age of 9. We've created this blog in hopes of finding more information, and those who suffer with this disorder so that we can further educate ourselves, our son and others.
Friday, January 13, 2012
Break from School .... but not from Pain
Z made it through most of the day without pain, he came to me at about 6:00 p.m. with pain in his legs. I gave him 2 Benadryl, then around 9:00 I gave him a Tablespoon of NyQuil so he could rest from the pain. He does his PT everyday at 6:45. I'm planning to have him do that twice a day to see if it makes a difference.
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Michelle- I've been reading about Zachary. I'm so sorry he is hurting so badly. I don't know if I can help but if y'all want to come in, just call. You all are in our nightly prayers. Tell Z we miss him.
ReplyDeleteEmily, Robert, and Brayden
Emily,
ReplyDeleteThank you so much for keeping up with Z. I'm not sure what the deal is with him right now. I'm noticing that even a little bit of activity brings on the pain. Honestly? It's frustrating! And it's very emotionally and mentally draining ... I've done so much research I think I should be able to have some sort of a degree by now, lol. Dr. Jordan has prescribed him with Valium for when the pain gets intense like it was last Saturday. Z has been handed a pretty rotten deal, the superficial siderosis is a lifetime of pain and because they aren't able to repair the cause it's going to be a pretty bumpy ride for Z. He misses you guys too! He asks about visiting all the time. We may have to come by sometime, just for an uplifting visit. You guys know how to make him smile!
He goes in on the 24th to see an orthopedic specialist, in hopes to figure out what else is going on with his back. Keeping our figures crossed and our prayers strong we're hoping it's something simple and easy to repair.
Thank you again! Emily. If it weren't for your keen eye and expertise we wouldn't even have the right diagnosis. We appreciate you and all the therapists there, they make Z feel so important, he's always the "Big Man on Campus" when he goes there, lol. ;)
You Guys, ROCK!!
Michelle, Robert ... Oh, for the love, the list is long, lol. Ashley, Casey, Kelsey, Aubrey, Zachary, Wesley and Brentley ...