Better

X is doing better. He didn't come into our bed last night until 3:00am and he slept peacefully (meaning, I didn't get kicked in the head). The amoxicillin must be taking care of that ear infection. I looked back and he has had 4 ear infections since Feb. We'll definitely make an appt to talk with ENT and talk about tubes. I remember having to do that with our oldest, N, and it was an agonizing decision to make. Not anymore. Getting tubes seems like nothing at this point (if that is what will be recommended).

X still isn't eating much, although he did have a small bowl of cereal and drank the soy milk before bed, that is the most he has eaten in several days. That is all he ate today. I called our nutritionist to see if we can keep X on his feeding tube longer so he can get more calories. He is definitely a bit crankier and has less stamina and needs more than what he gets with the feeding tube alone.

When I called, I found out our nutritionist no longer works at the hospital. Apparently I haven't talked with her since before May. She wasn't comfortable making any recommendations until she talked with the GI doctor because X 's case is "complex". She was most concerned about the amount of protein he gets because they decreased his protein in the spring. She also noted that the notes say they " don't know why decreasing the amount of protein worked". I'm a little concerned because our nutritionist was with us from the beginning and she understood everything and she was just plain great. Maybe having a new pair of eyes will help.

There are still so many unknowns with X. No one knows why he won't eat, why he couldn't tolerate the stomach bolus feeds, why he gets so ill with any little bug, and why less protein helps him. It's scary and overwhelming when I think about all the unknowns. Its easier to ignore it all when he is healthy and doing well. We really should start pushing more to figure out the underlying reason X can't eat enough.

I am hoping X's tube lasts until Oct.15th. He has small amounts of gross stuff leaking around the site of his button. The doctor we saw yesterday wasn't too concerned about it. It is a very tiny amount, but we've never seen it before with X. We just need it to last 17 more days.

It's been encouraging to see X get through this cold as well as he did. We still have a lot of unknowns, and that is unsettling. I'm just trying to trust in the fact that God knows what is going on and has since the beginning of time. I wouldn't mind knowing myself though too ;). Hopefully at our appt in Oct. we can get more answers. In the meantime we'll just enjoy X's health.

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