I just want you all to know how very much I appreciate the helpful ideas. I wish we could implement some of them. We can not change Little Man's formula in any way, shape or form. The GI clinic at the Large City Sick Kids Hospital actually GAVE us some of the very expensive, elemental formula, EO 28 that he did so well on. But darn the stupid people, they changed the packaging. That, was the end of that. I have it stockpiled for when he gets his tube, (the 15th of Jan) and he gets NO say on what goes in that little tummy. Bwaaahaaahaaa!! But if we changed the taste, texture, or even dared change the box in any form, of the Boost Breeze he drinks, um yeah, that would be the end. This child's food refusal is so beyond normal, he even flunked eating therapy. I have no idea why he never gets hungry, or even how he has survived the last five years taking his only calories for the day, in the morning, in the shower. But he has. Not well, but he has. The whole shower thing before our 14days are up is also a big no go. Because of his last infection with the first implant, they are being VERY careful with the incision. We were not even allowed to give him sponge baths for the first 7 days. I am just praying that he hasn't given up on the formula all together by the time he gets his showers back next week. He did get a sitting bathy kind of thing today, just in a couple of inches of water. Well, because, um. He was kind of playing in his poop today. That, is a first and it had better be a last, because I was royally pissed. Even for his emotional/cognitive age, he is TOO old to be pulling that kind of stunt. I tackled the boy and Bald Man did the bedroom carpet. What did we do before Oxiclean and Febreeze and Mr. Clean Magic erasers?? You do realize I was forced to raise my other children without the benefits of these life saving and necessary products. Like asking a parent to breathe without using any air. Jan 15th will be here before we know it and all this worry will be over. (Not the worry about the skin infections, no, that one will just be starting, but hey, who has everything?) Lurve all of you, thanks for thinking of us. We are hanging tough. Tough and poopy.
Saturday, December 29, 2007
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4 Kids Who Want To Play:
I still wonder if my idea wouldn't work; if I had more energy I'd do it up and send it to you anyway (probably it would not but I want to think that SOMEthing would, for all of your sake)...I know you're in your hole right now but I told Girlfriend part of it and I guess she told you. It is maddening from all the way over HERE not to have SOME way of getting something down the boy's gullet so I know you must just be in agony over it. I know exactly what it is like to watch your child literally starving to death--remember, I'm the one with the babe who was seven pounds at birth and five pounds at eight weeks of age because it hurt the poor thing so much to eat that the child simply stopped, which bought us an NG-tube, then later the G...I try not to think back on the panic I felt during those eight weeks, because wow, awful. I have said it before, and will say it again, there is NO satisfaction in life quite like that of pouring the perfectly-engineered and desperately-needed calories into a child you have watched starve themselves...the doctors tell you how much to give, and then THAT IS HOW MUCH JOLLY WELL GOES IN THEIR STOMACH! Takes mere minutes and they have NO SAY AT ALL...I'm a sick woman, but remembering our first wondrous days of being about to do that makes me giggle with glee.
On a completely unrelated note, HOW IN THE WORLD CAN A CHILD WHO EXISTS ON 300 CALORIES PER DAY PRODUCE ENOUGH POOP TO PLAY IN??? My most developmentally-delayed one pulled that three or four times during a time of GREAT stress in our household, and OMG I wanted to KILL the child...here's hoping that's the last you see of THAT little behavioral gem.
I hear you on the cleaning products. In my current roommate situation I don't have the armada of cleaning things I had in my own home and it's driving me nuts.
Other than that, I'm at a loss what to say anymore... I'm just thinking of y'all, is all I have to offer.
((HUGS))
I am so sorry you are going through this. It sounds so difficult. I'll keep up my prayers.
Oh, gosh. That sucks. I remember when my daughter took her poop out of her diaper and use it to paint on the wall. It was disgusting. Hope tomorrow is a better day.
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