Thursday, June 24, 2010

146.8 Peaceful Day.

Finally no taxi service after today required for older kids. Pretty girl has her driving pass to get license and summer school is done.

I did have a drive to the lab early this morning to have blood drawn to see what little Guy Jer's cortisol levels were for the growth Dr.

Talk about stress, he tries to get all his calories at night by drinking Pedisure through the night. Blood draw had to be fasting. Eating all night is partly the fault of being tube fed and how I would and still do always try to pump calories into him. At night is when he lets down his resistance guards and I could get him to eat without rejecting as we were trying to teach him to eat and move from feeding tube to mouth feeding. If anyone has ever tried to start out feeding baby lambs or even kitty's that's as close an example as I can get to what teaching Jer to eat was like. He had no milk in his mouth for 7 months. He had to pass a swallow test without a ventilator pushing his lungs open and removal of a ventilator didn't happen till he was almost seven months old. He had started to learn to suck, but then his trach was removed and he was scared to suck after the removal, and because he had to coordinate breathing with swallowing and not choking it was a continual chore. Night became the easiest to get any fluids in him. I taught him to drink with a ketchup bottle that has the long squirting end. I would aim it to the side of his mouth and push a tiny bit and wait until he swallowed. I would post a picture of this bottle but they got chucked as soon as he could suck by himself. Only me and pretty girl could get him to do it without it being all back over us.

It also takes womanly patience if you know what I mean.

We had a feeding specialist that came and helped think up other tricks but I usually was a bit ahead of them only because I had had other children and feeding animals under my belt to pull knowledge from. Every day we had to use a little bristly brush on his gums and stimulate his mouth or maybe desensitize his little mouth is a better way to explain. We worked on drinking out of a cut away cup so that I could see when the liquid hit his lips and kept him from freaking out by drawing it back away for a second and then doing it over and over again. He could drink out of the cup before he figured out how to do the suck swallow motion. We tempted him later down the road with colorful straws and soon he was working his little lips over the straw till finally we were able to have a sippy bottle that you have to suck out of and this became his bottle. This whole process took six months in an of itself to teach. Now we are stuck and he thinks he needs to get all his nourishment from the drink. So you can imagine what last night and no bottle was like, late to bed and then sleepless on top of that. So grateful when we were done and able to fill his belly with some liquid. Surprise he did eat some of my breakfast bar so that is a gainful plus.
Well needless to say I didn't get to run or walk because it was to dang hot by the time I made it home. Instead I did chores with kids and tried again to clean up the demolition from last nights escapade of the snake which is at large still.

1 comment:

  1. Oh honey. What a night. What an infancy eh? Reminds me so much of Chickadee, except in a sort of reverse as she lost her suck-swallow-breathe over time.

    I hear you on the run/walk/hot. The snake would keep me awake for a couple of hours. And you are just amazing.

    Look at you!!! Look at your wonderful pictures! I am so proud of you!