Here we go again!

February 8, 2005

Hey Y'all!

O.k., continuing the post I started yesterday. Graham had asthma

like symptoms brought on by Bronchitus. He's fine now.

We have some good news! We now are getting the E. D. Waiver in

Virginia and also we were approved for Medicaid for Connor. Whew!

But the Pede. Endo. is not happy that Connor's weight plateaued.

So, now we have to go back to the Pede G. I. Guy in Roanoke.

My questions are: How many calories a day does Connor need to gain

wt and grow on the shot? Presently he is 21 lbs and 27 inches

long. I guess the older Connor gets, the more he realizes that he

is genuinely not hungry. Even on Periactin, his eating behavior is

to sit at the table with the family, eat three bites of food then

say, " All done Mommy! " " Go Play. " No amount of cajoling or

persistent enforcement works. We do offer high calorie snacks. I

bake a killer pumpkin mini muffin that's loaded with good carbs and

fats for him. He'll eat two in a day plus two bottles of Pediasure,

sometimes three. We give him a bottle to take to bed and it's

almost always gone in the morning. By my calculation Connor is

getting about 900 calories a day. Of course when he's sick, this

goes down drastically.

So, even though I've fought this off for two years now, I think I'm

to the point of saying, " I guess a g-tube isn't so bad. " Recently I

reviewed the convention DVD's and the pt. that Dr. H. made was that

we are in essence fighting against their very nature to eat as they

are the thriftiest phenotype out there. Starvation is natural to

them. Well, if medical intervention is needed, so be it.

So, what's the good stuff to put in the tube. How long is the

surgery? WHat type of pumps work well for you all? I'm

anticipating that we are going to need only night time feeds as he

is an oral eater right now. His reflux appears to be very mild

right now. We are controling it with Zantac primarily. The

prevacid is hard to give his as he doesn't like the grains or the

taste.

That's all for now. S.T. is here. Advice would be appreiciated!

Thanks,

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