Our Special Kids | Forum profile

Well, he has no cause known other than general muscle weakness. He did do ST for a bit for the eating. The therapist noted the coughing and choking but attributed it to him stuffing his face. He's a packer. lol. At the time of the study, though, he didn't pack which also added to the questions kwim? If it's pooling and holding without packing, what happens when he packs. I haven't noticed a difference in consistency. Like,...

i don't use d's caringbridge site anymore and haven't closed it down/ I never really got personal and updated what was really going on in our day to day life. we never posted personal (like d's surgery) updates or anything. We are very private about things and felt it just wasnt for us, same as fb. if people really wnat to know what my daily life is they would be there to see it and help us. but that's just me.

I only update the caring bridge site when she is inpatient. Mostly because most of my calls are long distance so it is easier to do caring bridge.

We are kind of in this same boat. Kendall has had vitalstim therapy which did enable to start drinking from a bottle back in may, although she still could never have enough stamina to take in all her calories that way. Now we are working with stage 1 baby foods, and are noticing a very disturbing cough/sputter/choking again on those. We d/c'ed the baby foods almost two weeks ago - and ZERO coughing/gurgling since. GI is referring her to a...

I use the caringbridge site to let people know how Brody is doing medically. A lot of my friends don't want to ask me, and were uncomfortable asking my closer friends all the time - so this really is a good way to keep everyone informed at a comfortable distance if that makes sense. I know it sounds weird, but some of my friends are strange and really need time to process what it happening before they can have a conversation with me about...

I use Asa's CB site as a journal too. I keep saying it is mostly for my memories. I do find it is easier to open up about worries and fear and hopes on the site more than in person. I think sometimes it is hard for friends or family who don't understand what is going on to ask questions or comment. I find by being open and honest on the site I take some of the stigma away from having a special needs kiddo. I never mind talking about...

I would think about another swallow study. Sounds like something may have changed. Does he do better with different consistencies? Less coughing with something thick than thin?