could it be... getting better?

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.

But.....

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.

Adam's first conference

So a few days ago, I'm in line at Walmart, buying Christmas wrapping paper, Adam is in the cart and I hear, "Hey, Adam" from a little girl.

Adam hides his head and won't look at her. She is super chatty- telling me all about the following: she goes to the same daycare as Adam, is in his class, she tells me what she's buying and about all her visitors coming to her house, names them and I am overwhelmed by her articulation and how she is speaking to me.

Her father is with her and asks about Adam and I tell him that he is 3 1/2 and her father seemed kind and just remarked how shy Adam was.

On the drive home, I was sad. I don't know what it was about the encounter. Was it that it was a reminder of how "behind" he is, I don't know. It was unsettling. It was like my head started spinning and I was thinking that she's so advanced and all those normal kids are and then they're going to learn more and always be ahead of him and the matthew effect and all this crazy kooky stuff... you know when your thoughts just go all out of control and you're worrying about things that aren't real. Well, that was my car ride home.

Later that evening, we went to Adam's conference (not at daycare) at his preschool disabled class. His teacher had all wonderful things to say. Yes, he is really difficult to understand, but she told me that his receptive is age appropriate and many times she thinks that he is advanced compared to other kids with what he can do and what he knows. When you ask him questions, he knows all kinds of things, like all his numbers to 30, letters, his name, other word recognition, shapes, colors.  He can't tell you all these things, but he points and he can follow directions. She reminded me that he has only been able to speak for a year, his growth in this area is huge. He laughs and plays well with the other kids and is happy. Genuinely happy.

 He is learning all the time and I guess his first conference was  a snap out of my crazy kooky worry thoughts that weren't real. Because what is real is that he is perfect. Perfectly happy and so am I.