Tuesday, November 04, 2003

Did not workout this morning. Got home at 2:30 from the audio lay down. Everything sounds great. I'm very excited.

Jacob had an appointment today at Children's Hospital with his pulmonary physician; Dr. Margetis (sp.) Julie took him while I had Sophie visit me at work. I love having her visit. She's so much fun to watch. And she's very sweet.

Jake's appointment didn't go as well as planned. He hasn't grown in the 8 weeks that have passed between his last visit. 8 weeks! And he hasn't grown an inch or gained any weight. It's like I don't know what to do. We feed him anything with fat in it. And we have done everything his doctor's have laid out for him. And still he doesn't grow.

You can't realize how distressing this is to hear when you're a parent. And the doctor mentioned extreme situation in which some kids get bags inserted into their abdomens so that they can have night feedings.

When Julie found Sophie and me as we walked out of McDonalds, I took my sleeping son in my arms while Julie has some lunch. After she told me everything I was on the verge of crying. I held this innocent little boy and I wanted to squeeze him so tight that the CF would ooze out of him. Wishful thinking, I know.

We have been so blessed that his lungs remain healthy (I almost don't want to say those words out loud), but he is under nourished and you can't help but feel like you're doing something wrong. Yet, we're doing every damn thing we know how to do.

There's nothing you can do to detect that they're not growing. I honestly thought he'd grown taller. He FEELS bigger to me. I just can't fathom how he hasn't grown an inch.

But, this is the disease. This is the torment we face every freaking day.

You only want your kids to be safe and healthy, you know? Is that too much to ask?

No comments: