Tuesday, November 18, 2003

Just got a call from Jules. Jacob had an appointment with his GI doctor this morning ands they're concerned that he isn't growing enough. He said that this happens with CF kids. They get on the enzymes and they don't want to eat all of the time. I'm sure being 2 also has something to do with it.

But the concern is that he isn't getting enough calories when he eats. The doctor brought up the option of a feeding tube that would be surgically inserted into his stomach. This is the second time they've brought up this method of getting him enough calories. But they want to wait until his next appointment in January before we discuss this any further.

Talk about taking some of the wind out of your sails. This news just deflated me. I could hear a bit of sadness in Jules' voice. I know she got teary eyed at the doctor's office. When I was on the phone with her I was starting to get choked up. How much more does he have to go through at his age? DAMN!

You know, I've been thinking about how we're going to survive the next year after our savings runs out. Jules still can't go back to work, not if Jake has to have procedures done and spend the night at the hospital.

I want to ask, "When are we going to get a break?" But that sounds so selfish, doesn't it? Jake's the one going through it physically. I dread... DREAD the day he begins to understand that he's different and begins to ask questions about his disease. I know that he is strong. But how strong will I be? How will I face the truth on THAT day?

The day started off so simple. I was running and feeling weightless for an hour. I was walking on air. Now my legs feel like blocks of cement and my shoulders are touching the floor.


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