Saturday, April 29, 2006

Blog Reboot

It occurs to me I really need to start using this blog again, not only to help record Susan's progress but also in the hopes of finding useful advice through the blogosphere.

We attended your average 50-guest birthday party for a two-year-old today. I have to credit them for their restraint. Aside from the large group, it was a reasonably modest affair with pizza, cake, sodas for adults and juice boxes for the kiddos. Susan is recovering from her second ear infection in three months, so was clingier than she might otherwise have been, but then it was also noisy and crowded with kids she doesn't know. Her preschool is so small and limited to kids under three, that tossing her in a group of thirty kids up to age 7 would have been totally alien.

Biggest concern right now: getting her to eat. She's still almost 100% tube-fed and we just have to find a way to get her to swallow foods. She'll taste just about anything, and will use a sippy cup, but she doesn't allow anything towards the back of her mouth. At school she sits with the other kids at snack and PRETENDS to eat. The OT is better than I am at getting bites into her than holding her mouth shut until she swallows. I don't have the wherewithal to force her, and if I try we just both get thrown up on and that's the least productive thing I can do.

She's been hovering around 19 lbs for several months now. It's frustrating. We might have a good couple of weeks where we can get a lot of food into her (through the tube, of course) but then she'll come down with a cold or a sinus infection or whatever and her food tolerance goes right out the window. Any kind of respiratory sickness gets her so gunked up with mucus that she can only keep down thin liquids, and even then we have to pull the slime out of her stomach with a syringe to stop her digestion from grinding to a halt.

Sounds gross? Welcome to my world, baby. Bodily fluids are as commonplace a subject in my household as the weather.


Anonymous said...

I hope you do reboot your blog. I have a child with autism and I, too, have received copies of Welcome to Holland. While the author and the people who send it out are well meaning, I personally find it to be one of the biggest pieces of TRIPE out there!!!

Drop by my blog if you wish.

Anonymous said...

I just found your blog (still not sure how I got here). I love the title!

I have gotten that damn poem so many times. I think every relative that has email has sent it to me, thinking they were the first to discover it.