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Tuesday, October 9, 2012

26 Days...

The more I try to avoid it the closer it's coming, feeding therapy.

I feel like ever since Nathan came home back in April of 2008 I've thought of and imagined the day he would eat by mouth and no longer need his feeding tube. I've dreamed of such a day, I've planned imaginary parties where we serve all *his* favorite foods and celebrated that he doesn't have any medical equipment anymore. But now that it's getting closer I'm getting more and more nervous.

Feeding tube is the only life Nathan has ever known. It's our safety net, it keeps him healthy when he's sick and most oral-fed kids wouldn't want to eat. It's allowed him to be discharged from the hospital a couple days sooner than oral-fed kids would have been. It makes it easier to give him meds that taste gross. He gets a perfectly balanced diet. He gets all his daily vitamins and minerals, all things good he gets. He doesn't eat junk food. He doesn't eat crap. He isn't "picky" he just takes in whatever we provide. All that being said, he hasn't gianed weight in about 2 years. He's gotten taller with no weight gain so he's gotten thinner. I can feel each vertebrae in his spine. I can see his ribs. He needs to gain weight, his GI dictor agrees and that is why we were referred to the feeding clinic; he feels that is the best path to take to get Nathan gaining weight.

I know all of this. I also know that Nathan isn't going to come out of treatment eating 100% by mouth, but I don't know what to expect. I know we aren't going to leave treatment without a feeding tube but the thought does scare me. He gets sick so often, how will we make sure he's eating well when he doesn't have a feeding tube? How will we be sure he's getting all the appropriate nutrition when he doesn't have a feeding tube? I know these are normal problems for typical kids but Nathan has never been typical. He gets pneumonia like typical kids get a cold. He's sick A LOT and I'm worried about that. I guess it all comes down to, I'm scared of the unknown... I don't do well when I'm not in control and since I'm not even allowed into treatment (except at certain times, a couple times a week) I have no control over what happens.

Add to that, Trevor isn't coming. I need to figure out child care for little lubbers for a month, 5 days a week since we'll be home on weekends. Amazing family and friends who are family have offered to help have been a godsend and taken away some of my fears. I'm still nervous to be away from him for so long each week. I feel bad that family has to take care of him since I'll be with Nathan. I hate that for these 30 days I can only care for one of my children at a time, not both.

I just want a crystal ball to tell me what is going to happen... anyone have one I can borrow?

1 comment:

  1. Oh Laura, I can read the pain in your words. Your fears for both of your boys are so evident. It is so hard to find the balance when it comes to parenting a child with special needs and their sibling with needs of his own.

    I wish I had a crystal ball for you to borrow.

    All I know for sure is that you're doing the very best you can for both of your boys. That's all anyone, even you, can ask of you.