Waiting

We're still waiting to get insurance authorization for the swallow study. Sarah told me to try giving Natalie her milk/pediasure combo at home without thickener to see how she does.

As we were waiting for Sarah today, I noticed another mom there with a baby who was attached to a feeding pump (once you've used the equipment, you recognize and know immediately what's going on, even when it is nicely concealed.) Our badge says "rehab" because we're there for therapy. Her badge says "ortho", and those patients are usually the ones with casts or on a wheelchair because of congenital bone problems. Anyway, I talked to her because I wanted her to know about the therapy Natalie is getting, if her baby had a g-tube because of aspiration (since she wasn't there for therapy).

She said aspiration wasn't what they were thinking...he had just stopped eating much and he has DiGeorge Syndrome. Her baby is 20 months old and looked like he was much younger than Natalie, who is almost 16 months and more than 50% delayed herself. She mentioned a slew of other major organ difficulties that he has. I looked up the syndrome when I came home and it looks like the health difficulties are usually more severe than RTS, but the level of mental faculty will generally be higher than RTS. Reading the description reminded me of the first few months when we were learning about RTS. "What you don't know" is very scary, and it was very scary to learn about RTS. Now that we know about it, it is much less scary.

Anyway, I thought about how many times when we go to CHOC and I see parents with children who appear to be worse off than Natalie and I'm thankful for what we have. I know there are other parents who see Natalie and are thankful that their child isn't as delayed as she is. It's all about what you know and what you come to accept. I still have a hard time with it all, but it's getting easier, especially when we've been healthy for so long (has it been almost two months since the last illness?) Natalie's smile tells me it's ok.