Amy, that's a great question. I think I am going to start working on weaning her off the formula. But she won't eat anything by mouth.
So the trick is figuring out how to give her the same calories with roughly the same volume (she gets 1080 cals per day at 1080 mLs of formula) and have it still fit through a tiny g-tube. The answer, for us is a blenderized diet. What it means is, like an infant, I have to test her on a variety of foods to see what can go into the blender (the SUPER blender which we haven't purchased yet as I don't have the $400 it will cost to get the blender that can handle this [$400 is with the huge medical discount] to make a blended diet recipe that will work for her -- giving her the right calories at the right volume.
So far she tolerates rice (which is good because that opens up Rice and Rice Milk both), apples, prunes, peaches. We are going to try yogurt next and then avocado. I will need to get her on a protein like a meat that can be blenderized or protein powder. Then it will be all blendered up and that will mean she will be off formula.
So the short answer is, yes, I do foresee a future without the formula, I hope by the end of the summer. But in the near term, we have to introduce really slowly, looking for allergies. I currently have 4 cases (6 cans each) of formula in my living room which should last another 50 days or so. I hope.
This isn't even addressing the panic I had yesterday when I needed to administer Grace's rescue breathing treatment while were at Social Security but I couldn't because we don't have a travel nebulizer. And I can't buy one yet because I have to wait for payday next Friday.
I should also look up how to hand bag a nebulizing treatment.
I will need to get her on a protein like a meat that can be blenderized or protein powder.
My first thought would be soy and beans, although I have no idea how much you would need to equal the same volume in meat.
I can't imagine having to figure all this out, I'll tell you that. You've got all my vibes for patience and non-allergic reactions.
Is the G-tube permanent? (And if I'm being too nosey, please tell me to go away!)
There's something more than dysfunctional about having a go at someone's groin without warning.
Uh, yeah. Jesus.
So, to figure it out, you go to the mypyramid.gov and plug in info on what a preschooler needs. I think I need to do this on a non mac because everytime I try it fucks with me.
Then I just have to figure out what I can add and subtract etc to make it work for Grace. For another kid about Grace's age with a g-tube this is what her blends look like:
12 oz rice milk
8 oz apple juice
1/2 cup of veggies (e.g. broccoli) or 1 cup greens (e.g. kale)
1/2 cup grain (such as brown rice or quinoa)
1/4 cup wheat germ
1/4 cup beans, chicken or fish
1 dried prune
2 TBSP blackstrap molasses
1 TBSP olive oil
1 TBSP maple syrup
1 tsp iodized salt
The g-tube isn't permanent, necessarily. I mean, whenever Grace is willing to eat enough calories it can come out. But for her entire life, she has never taken anything by mouth. She has a huge oral aversion and because she is tube fed on a 24 schedule, she never feels hunger so why eat? When we are ready to do a severe wean, we'll need to find a place like Toft House in Everett to take her on and how we will pay for that remains a mystery.
Many g-tube kids take ages to come of the tube. By ages, I mean, like multiple years. I have visions of Grace turning 21 and bellying up to the bar to pour shots in directly to her g-tube.
Molasses! That's unexpected.
I have visions of Grace turning 21 and bellying up to the bar to pour shots in directly to her g-tube.
Well ...
Oh lord, there was a woman on Intervention like that once for real.
Molasses provides a lot of calories for little volume. I could do corn syrup too, I bet. Or, if she's not lactose intolerant, than heavy cream.
And doesn't molasses have some sneaky nutrients?
Yes! Especially iron. [link]
There we go. YAY Molasses! Not only is it good for you but rum too? Or is there no molasses rum connection?
