Wednesday, September 20, 2006

Where We are Today

Today:
Little Man continues to improve in his motor skills. Bald Man had forgotten to give him his benedryl the doctor has prescribed to help combat the chemical effects in his body. Well, no wondering if it was helping. Yup it is. More tremoring etc. We didn't forget today.
Little Man is pooping better and with less drama. Thank goodness!
The not so great stuff. Day number 11 with no formula. His calorie intake yesterday. Zero, yes, you heard me correctly, he ate NOTHING yesterday. Not a thing. Not so good. Today, he did better, a bit of breakfast,(8 waffle sticks) a bit of lunch, (a piece of pizza)and for dinner, 2 hot dogs. So today was good.
We have been here before. 4 years ago he nearly starved to death. You know how your mother always tells you not to cater to your kid's food whims, because your child won't starve themselves to death? Well, yeah, that only applies if you have a normal kid. What I found out is a neurologically abnormal kid, will and can starve. His daily calorie intake, sans formula was about 300 calories a day. Not enough to keep his body going.
I spoke with his GI doc today. We have to wait for one of two things. Either for him to become dehydrated or for Little Man to lose 10% of his body weight. Then it is NG tube time.
I was talking with my mom today about it, and here is the way I see it. Four years they wanted to do a g-tube. We have avoided it for four years. I am grateful for every year, every day we haven't had it. Although it is a scary, scary thought for us, with Little Man's undiagnosed immune problem, it is one of two choices when/if we get there. Certain death by starvation, or possible death by infection. While we don't have a lot of hope for avoiding this whole thing, he could suddenly begin drinking his formula again.
You want to know the irony of this whole thing? Really, truely I gave a laugh about it. His insurance has refused to pay for his formula (again!) because he dares to drink it. Ha, if he gets a tube, they have to! The irony is delicious. Really. Ha ha!
I took a header yesterday evening at a friend's house and you know what? I am really just too old to be skinning my knee. I pulled something in my shoulder, not terribly painful, but I just don't feel all that hot today. Advil and gentle with myself today, hopefully I will be feeling a bit better tomorrow.
The big news today? I took Tank, (age 19, recently moved back in with us. The Boomerang Generation. They call them that for a reason!) To the local community college to learn Diesel mechanics. I am so dang proud of him. Way to go Tank Boy.

2 Kids Who Want To Play:

Granny said...

Jo, insurance won't pay for the medicine Ray needs for his stomach.

Eventually he ends up in the hospital, they give him the medicine, he gets better. Cost? $50,000. or thereabouts.

They are stuck on stupid.

Glad he's doing better except for the formula of course.

Sugar Pixie said...

Go on, Tank! Good job!

And Little Man, too! Let's not forget the time Pygmalion's Wife took Scamp out for french fries because he wouldn't eat anything else and was starving himself.