I am almost afraid to type it- I don't want to jinx it, but it could, just might, maybe be getting slightly better.
First of all, we went for our monthly appointment at the feeding center. We see a nurse, a nurse practitioner, pediatrician, a nutritionist, and a psychologist. We see them one at a time and then they all meet in a secret back room and then they call me back in and discuss their conclusion and the team tells me what to do for the next month.
Last month's visit was a train wreck. I was so tired and as I was explaining our insane routine and how I never have time to play with Adam because we only spend four hours a weekday together and three of those hours are torturous in a strapped down chair in a feeding session , I started to cry. I mean really cry. I'm not real sure what the psychologist was writing but I'm pretty sure it was something along the lines of "kooky stressed out mother, needs meds"
Anyway, they got to see firsthand how his feeds are no shorter than in October and are still a constant battle. So their recommendations last month were to take away his control completely. We went to me and Phil giving him his food directly- feeding him, like he is a baby. He no longer gets to hold the spoon, cup, fork. Ever. At all.
At first, I was saddened by this step backwards, but it seems to be for the best. He no longer can throw the food all over the place and the only control he has now is that he still will hold food in his mouth and refuse to swallow it sometimes. There is no pattern to this behavior, it's not like he does it with certain foods but not other foods. Nope. It's like whenever he's in a mood, or feels like it- that's what happens.
Typically we give him about 30-45 seconds to chew and swallow. If he doesn't, then we give him the next bite- which sometimes results in all the food coming out of his mouth and he loses play.
So, last month's changes: caregiver feeds him all the time and we had to increase his tube feeds, he had lost weight. It was a bit sad.
This month's appointment. He is up in weight by 2 pounds, so... we can take away a bit of his second nighttime feed and increase his amount he has to drink in a structured meal. We are still giving him the feeds, but this subtle change is huge for us.
So now we will do:
6 ounces of Carnation Instant Breakfast with whole milk 3 times a day and 3 ounces of food 3 times a day. This is in a structured feed therapy session.
He will get tube fed 300 ml and then another 60 ml (this is 240 less! ) while sleeping.
We go back next month, so let's hope he continues to gain. He will if he eats outside of our therapies, like at school or snack or dinner with the family. The problem is that these meals are always leaving him full and he just ate, and is 3 , and wants to get up and move, not be made to sit more with us, but let's hope.
It feels like with him, progress is forward moving but forward moving in a crazy zigzag up down, eventually you move forward, but you spun around a bit to get there.
6 years with Asha
2 months ago