Friday, December 28, 2007

You'll Dig Your Eye Out!

I told my husband the other day that this surgery thing with Little Man is like digging your own eye out with a spoon, without the benefit of anesthesia. The best part of all??? I get to do it again with the remaining eye in a just a wee bit over two weeks. I don't think I shall have recovered by then. At the same time, I wish it were tomorrow. You see, our world is crumbling, our son is rapidly losing weight, why you ask? Because Little Man can not take a shower.
I am sure you are wondering what in the world that phrase means. Is it some sort of puzzle, or koan? No, it is just a statement of fact, but behind those simple words lie an entire line of dominoes, cascading down into a tumble of chaos and fear.
I am going to have to back this truck up, for those of you who don't know the WHOLE story. Little Man has eating issues. Always has. For reasons unexplained and/or unexplainable. When he was a wee babe, and not gaining weight, the doctor had us add an extra scoop of formula to every bottle. He did well after that. He weighed 31 lbs when he was three years old. The next two years were not good for him. I kept telling his pediatrician that I thought he looked very thin, but the doc kept telling me he was fine, just fine. I got tired of it by the time Little Man was five. He weighed 32 1/2 lbs. Just 1 1/2 lbs more than when he was three. I took it upon myself to make an appointment with the GI doc. They were ready right then and there to admit him and put a g-tube in. Oh, but my mother's heart just railed against the idea. It is hard to explain, but when you have a child who already has so many things "wrong" with him, it is just heartbreaking to contemplate "making" something else be wrong with him. I begged them to let us try get him to drink the formula instead of getting a g tube. At that point, Little Man woke up every morning very, very thirsty. One of the medications he is on makes people thirsty. He drank water and juice. We never were able to get him to eat much once he was past the very finely pureed baby foods. We were hoping we could find something juice-like he would be willing to drink. I wish I knew why it started in the shower, but for the life of me I can't remember. But for some reason, that is what we did. Gave him the juice-formula (it had to be non soy, non dairy and the only one that is like that is the more expensive than gold elemental formula) in the shower. Fast forward a few years and here we are. He can not take a shower for two weeks, and he will not drink his formula, (which, because of his insurance and now his own oddity isn't the expensive stuff) outside of the shower. He is down five pounds. We are worried. And now, now I wish I were digging my other eye out with a spoon, it would be so much easier than watching him NOT eat. Less than 300 calories a day right now. It is killing me.

7 Kids Who Want To Play:

Yondalla said...

Oh sweetie...such a delicate balance ... he needs to eat. I do hope they do the surgery before he looses too much more weight.

I know it is heartbreaking.

And of course there isn't anyway to let him take a shower in a raincoat or convince him that looking at a toy while sitting in the bathroom with the shower running are good substitutes?

K J and the kids said...

Ok so I am one to catch up on his condition.
Do they have a diagnosis for this whole thing ?
I remember watching one of those medical stories on A&E (Diagnosis Unknown). This kid had some strange allergy to an item which was in practically EVERYTHING we eat. It ended up giving him all kinds of other disorders before they were able to diagnose him. It was killing him...and his doctors and family just thought he was being picky. It was his bodies way of protecting him.
Any ways. Just wondering.

Azul said...

Jo, if only we could wish things better for y'all right now. You know we would.

I'm so sorry Little Man's calorie consumption is down so low; it's astounding how they can function on so little, isn't it?

I'm sure you're doing all you know and all you can, so I won't offer any advice. Just wanted to let you know I'm still reading, still praying, and still hoping that things get better for him soon.

Sue said...

I hope you are able to find a way to get him to eat. I can't imagine how worrysome it must be. Hang in there.

Eliza said...

Oh, Jo. I'm so sorry. I thought they had done the g-tube and the other stuff at one go, or maybe I am just mixed up (not only entirely possible but dang-near a CERTAINTY today), but as soon as I realized they hadn't already done the tube I thought "ohcrapandhehasafreshincisionandcan'ttakeashower!"

elizasmom said...

There is a not-funny-in-any-way irony in the fact that the routine that has kept Little Man eating enough all these years is now backfiring on you. Not fair at all. I hope you are able to find another routine that will help him eat.

Mongoose said...

I don't suppose you could Saran wrap the site and tape the edges with waterproof tape long enough for him to shower?