We'll after a MRI of my head we've concluded that there are no new clots. This is "good news"... however the old clot is still there and doesn't seem to be dissipating much at all. Since I am already fully antocoagulated there isn't anything else to for it. So blood doctor told me to enjoy more caffeine, wrote me a prescription for 200 oxycodone, and sent me on my way. My headaches however are barely helped by the plethura of narcotics. Headaches have been pretty much constant for about a month now. I'm just hoping that I get approved for the new drug (Soliris) that is supposed to help with many of the PNH side effects. It is supposed to be the "miracle drug".
On a lighter note... my little miracle got evalutated Friday. Because he was born so early he is eligible for free* services from the state. In case he needs any cognitive, motor, or neurological therapies. ( *free for some, but my husband B makes "too much" money so it wouldn't be free for us if a plan is needed) Right now he just get's evaluations, which are free. Although he is actually 7 months old, he is really only 4 months old adjusted. He is showing to be at about a 3 month olds level. Which is not alarming by any means. She asked if he rolls over and I told her that he has rolled over twice. Wouldn't ya know it she puts him on his stomach and he rolls over right then. I can already tell he's going to be a show off. He has to get another shot in the morning... his flu booster.
Well... time for another pain pill. Take care.
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Hoping you get approved and that Soliris does it for you. Sorry about those headaches (and that pesky clot). Your little miracle is quite the cutie pie!!
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