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Posts by MotherWhimsey

See, for us the muscle biopsy was easy. He had it done on his right thigh and they gave him a spinal and heavily sedated him (or tried to at least). When the spinal wore off, he got up and was walking on it immediately and never asked about it or said it hurt or anything at all. He has abnormal sensation though and doesn't feel much pain so that could be why it wasn't a big deal for him.   Even though it was easy for us, I'd still ask yourself what you'd gain before...
Linden has always had low specific gravity (and he pees base, his urine pH is usually 8.5) and no one has ever seemed to think it was terribly interesting at all except one nurse practitioner. That guy came in the room and was like "wow, your kid basically pees water and it's alkaline!" and was all amazed. No one else has really ever even commented on it.
mekat, when they put it together they put pneumatic tires on it just to see which worked better and he pushed on the tires on those. The tires he has are solid core and they don't have tread on them, so if he pushes from the tire his hands slip a lot. Plus he doesn't like the feeling of the road crud on his hands. So those things combined and it has him religiously using the rims.
My son has had many and was diagnosed with Mitochondrial Disease. I'll give you a basic run down of how it went once we went to the neuromuscular clinic instead of just regular neurology.   They did the physical exam first and found abnormalities so they drew a CK (checks for some neuromuscular diseases like duchenne muscular dystrophy) and some other labs and scheduled an EMG.   He had the EMG (which was a short but miserable test). That tests the nerve...
Here's a video. I was trying to get him to do a wheelie but he wouldn't. http://s835.photobucket.com/albums/zz275/CoureysWoodenSpork/Medical/video/?action=view¤t=newwheels.mp4
It's just a clear plastic spoke guard and we stuck starwars wall stickers on it.
Here's a picture of it. Sorry, it's not a great one... I can't find my camera battery charger so I took it with my laptop.
I think there are two aspects that are the hardest for me. The first is just the basic daily medical chores. It just gets tiring after a while. Most of them are absolutely not optional (I would love to be able to say "oh hey, I'm tired." and go to bed without having to first hook up machines and make formula and plug in chargers, check temps, etc. I just want to go get in bed!) and others are more gray area. So sometimes I'll skip a day of something (like flushing his...
yeh, we can leave L's port accessed for a week. After a week we have to change the dressing and needle (so basically access it all over again from scratch). He prefers me to access him rather than the nurse at the hospital for blood draws, plus you have to wait for a special nurse and it usually takes forever, so I often access him and put on a dressing before we go for blood draws. Some blood draws you can do yourself and drop them off but a lot of metabolic labs you...
oh, and for whatever reason, with his last port, we never got to the point where the scar tissue made it painless. That port was put in his arm pit fat roll so it might be because there was a lot of tissue over it. This port is only 3 months old so I don't know if it'll scar up or not. It's on his ribs, so it has a lot less tissue over it and hurts less to begin with.
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