Thursday, June 29, 2006


I thought we could use a fresh coat of paint around here. I liked the obnoxiousness of the old, green template, but this one just feels happy.

Tomorrow Susan's getting tubes put in her ears to mitigate the repeated ear infection situation. I hate taking the surgical route, but the constant ear and sinus infections were getting to be too much of a problem. The ear, nose and throat doctor described her ears as "just pitiful." How sad is that? She's probably had some pain and hearing loss going on for a while because of fluid built up in her inner ears, we just didn't know about it. Put that on my list of things to feel guilty for - it's about number 1003.

We've put off going to a feeding clinic because of the cost and time commitment this summer, and because she's making good progress on her own. She's drinking from a sippy cup and feeding herself smooth foods like pudding and yogurt. She only takes about an ounce or two at a time, but it's good progress. In August she's going to start going to school for six hour days, and I'm going to try letting her go without tube feeds at school and see how she does. If she starts to lose any weight we'll obviously have to work out at least one tube feeding while she's there, but I think she can handle it.

She has advanced to the status of toddler recently. It's very exciting. She still wants something to hold onto while she's walking, but the physical therapist has managed to trick her into taking as many as nine independent steps at a time. Woo hoo!

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.