News and Tidbits

"In regards to the protein being present it means that if the protein were completely absent that would have been confirmation of x-linked SMA, but since there were some protein present that is no guarantee that it is functional. So basically nothing can be ruled in or out yet."

That is the message we got from our SMA doctor the other day. That is from the blood that got drawn on January 20, 2008. We have ruled out three SMA's. So it pretty much tells us that Owen has Owens disorder.

I was listening to Paul Harvey, my hero, the other day in the swather. He was talking about sleep apnea and the people with irregular sleeping patterns, and how they die sooner of unlikely causes. I just about wrecked the ole swather. Granted I don't have sleep apnea but the other is just down my alley. Not to pitty me but I haven't seen a full nights sleep in a couple months and poor Gayle is on the same ladder just higher up. I guess I should be happy getting the chance to sleep in my own bed, but a half a dozen alarms each night is getting old. I won't even start to talk about the feeding pump. That thing is a couple alarms shy of leaving this house in a hurry. One night Gayle set up the feed rate to 95 instead of 45, because she has issues seeing the screen. I went to bed at 11:30 and that thing starting chirping at 1:30. I flew out of bed thinking it was the vent or 5:30(when it usually goes off). I don't know about anyone else but if I get woken up between one and four hours of sleep, I might as well not even gone to sleep. I shut the thing off, said some horrible words, and went back to bed. That's not all that goes on in this house after the lights go out. Usually we have at least one or two other kids in our room at different hours of the night. So to say sleep disorder is saying come spend a night with us! And if I die it will probably be from complications of throwing the feeding pump!