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Posts by MotherWhimsey

it just takes a bit to adjust back to home life. The hospital is traumatizing but they seem to get over it a lot faster than the parents do. My kid has been in the hospital a lot and he's done okay with it all. We just got out on Tuesday and by Tuesday night it was like we'd never been in. So they do bounce back but sometimes it can take a while. You also have to take into account that she probably feels like poop right now and that's probably contributing a lot to it....
oh cool! I didn't know you could get softies with the hinged kind.
DAFO softies. They don't have a hinge or anything but they wrap around the front of his leg a good bit and give him extra support.   Edited to add: the softies are like the material of the "chip" that goes under the strap. They are kinda like a booty that goes over most of the foot/leg and completely covers the parts that are under the DAFO. The hard plastic part goes over the soft shell.
We've always used DAFOs but we've never done hinged. We may not get those, I don't know, but his PT was saying that was an option this time. I'm not sure if we'll do it or not, I just don't know that much about what that changes. His muscles are breaking down and he needs more support now. He's only got 5% range of motion in his feet because he compensates for the weakness by walking tip toe and we don't want that to get any worse. I'm pretty sure the hinges don't let...
We're going to be moving from non hinged to hinged soon I think. We're going tomorrow to talk about it with the ped.
I much prefer the G tube over the NG. Your friends that have to go to the ER to have them replaced need to give it a try themselves. It's really not hard at all. It's actually easier IMO than replacing an NG.
Bill Allen is the freaking bomb! He is amazing. He's a psychiatrist (I think) who specializes in SN behavioral issues and he's just awesome.
I know when my son has aspirated some because he gets a chronic dry cough. But before the cough sets in, sometimes it makes his chest junky and wet sounding. He also clears his throat a lot. He's always been a silent aspirator unless his entire airway was blocked by something.
I have a child with a metabolic disease that is not detected through the new born screen. But knowing personally how devastating they can be, I have done and will do any new born screening that is offered. Even though the chances of your child having one of the diseases tested is small, it is well worth knowing. If you could alter a child's diet or give them a pill every day and prevent the heartbreak that goes along with some of the problems caused by metabolic disease,...
My son aspirates and always has. He failed all consistencies so he's been tube fed since he was 3 months old and we found out. He is now 4 and gets J feeds. The aspiration has changed a bit over the years. We did a swallow study not too long ago but instead of focusing on his actual swallow, we tested to see if he could chew food up and spit it out and if that would be safe. He really wants to eat, so that was our compromise.   The food in saliva thing can still be...
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