Post by dancingirl21 on Jun 29, 2015 14:53:14 GMT -5
Such a fantastic outcome!
Regarding the money, I'm up for whatever. Honestly, though, we raised money for you and your family so if it helps cover outstanding medical expenses, that's great. If there's extra, I say you all go enjoy a long weekend somewhere. After all the stress your family has been under, you certainly deserve some time to have fun together!
Thanks everyone. We are elated but it's also a huge adrenaline crash, if that makes sense? And a bit sad, weirdly, because if his brain was normal he WOULD need surgery...and the only thing keeping us from it is the fact that a good chunk of his brain is completely gone. It's weird, and complicated, and a bit of a shock.
H and I talked and when the dust settles, if it's okay, we would like to split the money. We do have about $700 in medical bills that aren't covered, but we also want to donate the rest to an organization that helps cranio families during and after surgery called Cranio Care Bears. We were going to get a care package from them but I just cancelled. It is a small, mom-run 501c3 group but I would love to celebrate by buying up a chunk of their Amazon wish list. (https://smile.amazon.com/gp/aw/ls?lid=13C0TJTU5F2OL&ty=wishlist)
Great news, I'm so happy for you! Do what you want with the money, it was a gift and if you don't need it for expenses, etc, then treat yourself/your family to something or donate it.
I think Children's Hospital has a charity care find you can donate to. It's a little awkward - in practice, you are paying doctors to see uninsured/under insured patients they would otherwise not see, or they'd go into debt, out whatever. But sick kids are a "shut up and take my money" thing for me.
I hope it's not insensitive to ask, but what will be the long term effect of his stroke?
Not insensitive.
Unfortunately, we don't really know. The brain is amazingly plastic and since it happened so early in his development, the right side will likely take over some of the functions the left usually does.
Right now, the only sign he shows is high muscle tone and right side weakness. He is already strongly left-handed which is not normal for babies.
He surprises us every day. He is meeting milestones earlier than his brother did, rolls both ways, pushes up, and even tries to crawl. And I bet he is sitting independently fairly soon too. He also seems to see and hear fine and makes normal baby noises.
Down the line, he could have speech and learning disabilities, delays with walking and balance, seizures...we just don't know. The range is huge.
As far as his brain size goes, don't doctors usually say we don't even use a majority of our brain matter? At his age, he may be able to compensate for almost everything..,or maybe even absolutely everything!
Will continue to keep you in my prayers...especially thanksgiving for a decision made easy!
I think Children's Hospital has a charity care find you can donate to. It's a little awkward - in practice, you are paying doctors to see uninsured/under insured patients they would otherwise not see, or they'd go into debt, out whatever. But sick kids are a "shut up and take my money" thing for me.
I'm assuming I was tagged in this because we donate to the Uncompensated Care fund at Seattle Children's. I'm not sure if all childrens' hospitals do this, but I would be surprised if they didn't.