Monday, June 13, 2011

My Little Puke Machine

So I have a kid who doesn't eat by mouth. Correction: I have a kid who doesn't eat enough by mouth to survive. He is also pretty freaking cute:
Spencer diagnosis is Multiple congenital anamolies due to an unspecified genetic disorder." What does it mean? That they have no clue what he has. Yeah, he probably has a genetic disorder. He has a giant list of medical issues which include cranio facial muscle weakness, mild hypotonia, bronchomalacia, largynamalacia, trachemalacia, submoucal cleft pallet, micgrograthia, low set ears, ptosis,possible distal arthogryposis with contractors in his fingers, left knee, and feet, club foot (unilaterial), ASD, VSD, hypospadius,hypothyroidism, central and obstructive sleep apnea, moderate to severe hearing loss, allergies to milk, soy, lavender, chocolate, and newly discovered, chicken, developmental delays, and whatever else I forgot..I also am not spell checking....
He has had five surgeries with two more in the works. He has had PE tubes, tear duct irrigation and tubes, g-tube placement, tentonomy, and a supraglottoplasty. He has a kick-ass feeding tube, supplemental oxygen at night (rarely needed), hearing aids, and a Ponseti bar he wears 12 hours a day. He receives PT, OT and is starting speech soon.
Needless to say...we have our hands full. Spencer is healthy as a horse except for the occasional ear infection (with tubes...thanks Pierre Robin Sequence). He is super smart and funny, and does something to wow me everyday. He is very interested in putting things in his mouth and toys that make the most annoying music possible.
Spencer also has something else:
REFLUX
My little man is an epic puker. He takes medicine for it and still is like a fountain. He has also earned the nickname "exorcist baby". He will respond positively to a food for a while and then slowly will start falling into old patterns. We have tried 5 different formulas and the end result is always to same: It works for a few months and then he turns into a puke machine again. After getting puked on for the millionth time, I decided that we were switching to Blenderized Dieting.
What is BD? Basically we take whatever a normal eating kid would eat and blend it up and shove it down Spencer's feeding tube. I've been trying to feed him baby food through his tube a couple feeds a day for about a week and he had been doing great. Then I started doing all his feeds as blends of baby food throughout the day and still gave him his formula at night. Now we are all in.
I have a worksheet I am using to plan his meals. We are starting off at 1200 calories a day and see how little man does. We can adjust his calories as needed.
Today's blend, which will last 24 hours, consisted of the following:
2 cups of baby cereal
3 jars of baby meat (I was only supposed to do three ounces...ooops)
2 jars of mixed veggies
1 jar of peas
2 jars of bananas
2 cups of Enriched Rice Dream
4 TABLESPOONS (Was supposed to be TSP) of Olive Oil
Totaling out at about 1500 calories.
Tomorrow I will be giving him the correct amount of olive oil and meat. I will probably switch to whole grain cream of wheat because baby cereal is confusing...I ordered a blender too to start blending my own baby foods because otherwise it's going to get expensive....

No comments:

Post a Comment