Fun Stuff > CHATTER
Blog Thread 4; Live Free or Blog Hard - 'cos we all like blogging
Welu:
Akima echoed my feelings.
It's good to have a support network of any kind.
Zingoleb:
Also I feel like an asshole 'cause I'm ignoring you Carl but I don't relaly know what to say other that I'm sorry.
Boiled Dove:
Damn Carl-E. I thought I knew frustration when it took about 6 months for them to find why my 17 year old was having seizures (small brain tumor) but that is nothing compared to what you and your family have been going through.
As a fellow parent I really feel for you, I've never experienced a feeling of helplessness like I did when they were unable to figure out what was going on and I'm sure you have been through the same thing, even worse. Yep, everything else seems like petty bullshit when confronted with such a situation, it does change your entire perspective.
lepetitfromage:
:cry:
*hug*
Thinking about you and your family and hoping for the best. I don't know how much it helps, but Nick had brain surgery when he was about her age and has been living with a shunt in his head for 10+ years. I'm so grateful for that little device...it's keeping him alive. I'm sure that doesn't make the idea of brain surgery any less terrifying but I guess my point was that while a shunt is invasive, if she needs it and it helps her, it will be worth it's weight in gold.
Carl-E:
We're actually pretty familiar with shunts...
Her boyfriend, who she met at Children's, was suffering from the same problem. He's had a shunt for three years, although due to some serious incompetencey, it's needed to be redone twice. However, he's in pretty good shape, now.
Re: Rewalker - I no longer have insurance, and medicare won't cover that. They don't even cover a decent power chair (I'm not talking hoverrounds, here - we test drove one that tilts and elevates, letting her transfer in and out of bed and get things from the cupboards... we're looking at some outside funding fromo OVR for that).
We're trying to figure out what's up with the eyes. Her pressure measures twice normal - about 39 - 40 lbs, normal's 17 - 22. At that pressure, she should be blind from the optic nerve being crushed.
After the opthomologist, she's coming home while we wait for the other test results and the medication to work.
I need to clean up a bit...
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