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Posts by MotherWhimsey

He sounds very normal. Walking at 13.5 months is nowhere near late. Anything before 18 months is totally normal.   My son wears braces for toe walking but for him it wasn't so much the toe walking that was the main problem but that he toe walks to compensate for weak muscles. So his weak muscles got weaker and the other muscles got stronger and eventually he couldn't be flat footed comfortably. He walked tip toed probably over 95% of the time though and like I said,...
I don't know what you guys are willing to do or not, but my son has an appendicostomy that has been awesome for him. He has poor motility and would get backed up and start puking. He was enema dependent for a couple of years and eventually we did the appendicostomy because enemas were mentally too hard for everyone. We flush him every day through the appendicostomy and that keeps him cleaned out. He never did really have accidents before because he couldn't poop often on...
Is she going to be going to the hospital where I met you once? There IS a down syndrome support group in that area. My little sister has downs and they live in that city. I can ask what resources there are if you'd like.
Shoot man, I wish mine were healthy. I don't think that's a bad sentiment at all. Who wouldn't want their baby to be healthy? Doesn't change how much you love them, it just means the child's road is an easier one and I think any mom wants that for her child.   My son was wheeling around a store once with his daddy and I was looking in a different section. He wheeled right past me and this guy turns to his friend and says "thank God my son is healthy." At first I was...
Linden got his new AFO's yesterday...     The hinge in action...     We had them done at a prosthetics place in town and they asked if he wanted any picture put on and he chose spiderman.     And because he's so stinking cute (and getting big!)....  
So a couple of weeks ago L was in the backseat of the car and started crying and moaning because he had a really bad stomach ache. This isn't an unusual thing for him, so I told him I was sorry and we'd be home really soon and I'd see what I could do. He was quiet for a few minutes and then starts just screaming and says that his stomach hurts really bad because his pee can't come out. Eventually he was able to pee (he's still in a diaper) and everything resolved. It...
no dude, the AMT mini-one button is WAY better than the mic-key IMO. But I prefer any kind of long tube instead of a button if you're using it a majority of the day. The extensions are annoying to deal with if the kid is just going to be hooked up all the time. We've had Mic-key long tubes, mic-key buttons, mic-key GJ long and button, depezzer tube, foley, bard straight tube, AMT mini-one, and a chait button (appendicostomy).   -The mic-key button annoyed the heck out of...
My son is one of the weird ones that has funky labs in a not typical mito fashion. He usually has lactic alkalosis (much more common in mito to have lactic acidosis) although in looking over his old labs recently, his was elevated once. We do standing labs every 3 months and you never know what you're going to get. One lab his 3-methylglutaconic acid was elevated (but glutaric was not), then another was elevated serine, theorine, and tryptophyn. They all are just really...
http://www.youtube.com/watch?v=D2Z04X86mLw
we blended food for a while. We got a vita mix and had a log of how many calories, protein, fat, etc he needed. Then I found foods and put them in the vitamix until he met those requirements, added water and blended. It took about an hour a day but wasn't too difficult, just a little labor intensive. For whatever reason, my son never gained weight on it despite putting plenty of butter and oils and such in it, so we eventually switched to complete pediatric which is a...
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