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Friday, July 17, 2009

Sponsor A Mile for Gwendolyn

First--please consider dropping ten bucks to sponsor one of Gwendolyn's miles. Her family is trouping all over America this summer to raise money for SMA research. Their goal is to raise $50k, and they've raised well over $35k. Go find where you wrote your PayPal password (or just go get your credit card) and donate at Gwendolyn has SMA type 1, and her parents have proven tireless in their efforts to advocate for her health and quality of life, and are excellent role models for the rest of us.

So, the babies have had some doctor appointments lately. They saw their GI doctor, who is concerned about their growth and nutrition. We're working with a nutritionist to try to cram a lot more well-balanced calories down their throats, but things aren't going so well. Every idea involves the twins drinking Pediasure or some equivalent, and they refuse them all, no matter the flavor. It is disheartening. I wish I could explain to them what a G button is--an invasive, surgically installed feeding tube--and explain that this is what we'll be forced to consider if they do not start eating better. Lauren is something like the 3rd percentile for growth, and Kyle is at 0 percentile. This means that 97% of Lauren's female peers and 100% of Kyle's peers are bigger than they are. It might just be mildly concerning if they were otherwise perfectly healthy, but fighting against the side effects of SMA most efficiently requires a good nutritional foundation, which these babies clearly do not have. It's been a bummer lately. Blah.

Kyle's also seen his orthopaedic surgeon. I love Dr. Segal. He loves kids, and seems to like parents pretty okay, too, which can't be said for lots of doctors. But he had to give us the bad news that Kyle's hip is dislocating. The muscles can't keep it in it's socket. Thanks to SMA. Seven months ago, his hips were about 30% dislocated (subloxed). Last week, they were 70% subloxed. So long as it it's not causing Kyle pain, the plan is to do nothing about it, since he'll never walk anyway. There are surgical solutions to this problem, but Kyle would have to be a bit older before we consider that. We know at least one other child who has had this surgery, and it doesn't sound like a picnic.

As for wheelchairs, we are currently in appeal #1. I don't want to think about it too much because I am seriously going to have a coronary over the stupid emm-effers at the insurance company, but suffice to say that the decision makers there are quite certain that the twins are impossibly young to be able to manage their own power wheelchairs. But they are willing to buy them a stroller. Oh, really? You'd prefer to give us a $1,500 special needs stroller instead of the $25,000 (times two kids) Permobil K300 PS Junior? What a shocking turn of events. Whatever. Readers, just don't expect me to update super often about the status of all this equipment. I'll let you know when we start the next appeals process, etc, but thinking about the minutiae of this complicated bureaucratic nightmare is taking minutes off the end of my life.
Our beloved physical therapist, Gayle, loaned us this Tumble Forms chair to try out with the twins. She delivered it to us yesterday, and we are in love. We're ordering our own versions (for the lowest available price of $239) for the twins, and I, for one, am thrilled. I feel like I spend half my life sprinting over to the family room to pick up a slumped over twin--a chair like this would allow them to play on their own and be belted in enough to keep them safely upright. It's almost as good as winning the lottery.

Okay, that's all for now. Don't forget to sponsor a mile for Gwendolyn. Peace out.

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