Tuesday, April 5, 2011
Noah has had a good week, he seems to be really enjoying his new Organic Pedia Smart, and I was lucky enough to score Medicaid assisting us with purchasing it on a regular basis through a local nutrition company. I wish they'd help with his pureed foods and such, but it sounds like we're on our own until he hits age five or is on WIC. I caught a cold, my first in years and I've been petrified I'd pass it to Noah. I'm so thankful for Chris and my mom's help. I don't know what I would do without them, they make trying to guard Noah from this germ a lot easier. I of course have scrubbed my skin off to no end after every kleenex use, trying not to breathe in his direction and am chasing all door handles and anything I can think of in the house with disinfectant toilettes. Nothing paranoid about me, but I know that if Noah gets sick it would be a million times worse for him that it is for me... not that I'm a bit happy about feeling as terrible as I do. But I'm in way prepared to fret over seizures, and an illness for him. Noah got his gait trainer today. A Blue Rifton Pacer. The verdict is still out. It's new. I don't know if he knows what do to yet. It will be a work in progress. And maybe when the weather gets nicer we can get outside and use it a bit more. We don't have a lot of indoor options with our current set-up. His head and trunk control still lacks so he kind of drapes himself over it and doesn't push off with his feet at all. He kind of looks like a limp rag doll. My heart ached for a bit. Not because he didn't automatically take off, it's just getting used to the idea that equipment like this is even necessary for him. This certainly isn't the dream you have for your child to be strapped to all these gadgets and apparatus. Noah also got to trial the cuddlebug. It's purple, but at least it's not pink. It weighs about 45-50lbs, not so cool. And it doesn't collapse down well to get it in and out of vehicles. Those seem to be the automatic drawbacks. And even though it has a sun visor I wish it were a little bit bigger as it won't catch as much sun as some of his stroller canopies do. I like that it's soft and squishy, I think Noah does too. It really feels like you're setting him in a big pillow. It's been crash tested, travel approved, and can also become a seating device. It does look slightly handicapped. But in a way it also kind of looks like a really fancy stroller. Noah seems to like it. He certainly didn't complain at all. We'll have to try it out now for walks or at stores, get a feel if it's a good match. The drawback is if we do really like it, Medicaid will not pay for it. The rehab company stated since they already gave Noah a non-returnable Kid-kart that he hates, that they refuse to purchase a new one for him (even though that purchase was nearly two years ago), Medicaid's position is that the kidcart could be modified as he grows. I asked what our options were and it basically it's to find an outside organization somewhere willing to purchase it (i.e. a church donation). And I keep thinking how am I going to swing that? Somedays you feel like you're begging for help because you don't know what else to do. Our pride and feelings of being self-sufficient were taken from us a long time ago. It's such a hard position to be in. You hate having to ask for help, you really do, it makes you feel like you're nothing. Like you're not mere inches tall as the world looks down on you, waiting to swallow you up as one of "those" that is weaker. Please continue to say a little prayer that Noah can dodge this germ that I'm carrying. And that he learns to stand up in his walker, it would be nice to see him take some steps someday soon. Love, Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Posted by Noah's Miracle at 10:17 AM