Food issues (for lack of a better description) are starting to become more pronounced with Russell. This is the stuff that there is NO training for. None. I'm in uncharted territory. I now have to gather as much information as I can from those that have gone before me in similar situations and from medical professionals in his life and I have to make a decision as to how to handle things best.
Here's the scoop.
Russell was born August 4, 2013. According to the medical records I was able to get ahold of, he was "on" the growth curve at birth. He was around the 25% mark. But he was on the curve.
Almost immediately, Russell dropped off the growth curve.
We will never know why.
Did his mother honestly not feed him? Did she breastfeed and it didn't go well? Did Russell have legitimate feeding problems from the beginning even on a bottle?
As he got older, he dropped further and further off the curve. When he was hospitalized on February 6 (for a broken arm and the subsequent abuse that was finally discovered), he weighed less than 10 pounds. He was 17 months old.
Russell was hospitalized for 6 days upon coming in to Care. Then he went to a shelter in Central Texas. At the shelter they worked hard to fatten him up. He was on Pediasure and they fed him around the clock. They also had him eating baby oatmeal and other stage 2 purees.
When he came to me, I kept him on the same diet at first (though he no longer ate in the middle of the night). He didn't take the overall quantities that I was given by the shelter in his dietary plan. (I have no idea if he was honestly taking those quantities in the shelter. I seriously doubt that he was.) But he ate regularly and without complaint. His tongue thrust isn't incredibly pronounced and he had no problems taking food. He could not drink from a sippy cup, but he had no problems with his bottles at all. (Other than being a little messy sometimes as he'd let fluid drip out of his mouth. At the time, I thought little of that.)
As the weeks went by, I started making my own food. At first all I did was make purees like the store-bought jars. I'd make them a little thicker though because he didn't mind. I gave him a wide variety of flavors and he didn't reject anything.
I started adding texture. The first food with texture was probably refried beans. He ate them without complaining. He started eating oatmeal for breakfast - first with bananas, then with cooked apples or even raisins.
I started adding tiny bits of meat into his food about 3 months ago I think. The first time I did it without a gravy though it was obvious that the texture was too much for Russell. I had chopped up tiny bits of chicken and stirred it together with rice and broccoli. He didn't have to chew much to eat it as the bits were so small. But he couldn't eat it. Just couldn't do it. The food would sit in his mouth. He wouldn't try to chew or swallow.
I solved that problem by making a gravy and stirring the chicken, rice, and broccoli into that. Russell ate that batch of baby food without any major issues.
Things have been going downhill for the last couple of months though. So much so that I've got Russell's speech pathologist involved and she's added some feeding goals to his overall list of things she works on with him.
Russell is rejecting food - especially anything with too much texture. He's very much rejecting anything with meat or beans. He'll still eat the oatmeal for breakfast. But he is VERY slow about it and he's going about things in a way that is markedly "not right". He'll devour applesauce or regular yogurt. But he seems to not want to eat Greek yogurt anymore.
Russell only wants to eat super soft purees.
His speech pathologist and I both agree that Russell possesses the ability to eat absolutely everything I'm feeding him. He chews. He can move his tongue correctly around his mouth like he's supposed to. And there are no concerns of aspiration.
But he'll take a bite of oatmeal and he'll just leave it in his mouth. He won't complain. He won't try to spit it out. He'll just leave it there. It will take him as long as a minute before he gets around to swallowing the bite. Even then, he'll often pocket bits of food on either side of his mouth.
He should be able to sweep the food off a spoon. He's not doing it
consistently yet. And he's worse when the food is thicker or has a lot
of texture. The therapist noticed this morning when feeding him that he
even tipped his entire head back to get his oatmeal off the spoon rather
than use his tongue the right way.
When he drinks, he guzzles so bad and then milk just runs out of the side of his mouth. Even when I take the cup away from him (because he is now drinking out of a sippy cup), milk will pool in his mouth on the sides and even in the front. He simply doesn't swallow it all.
And lately, if the food I'm trying to feed him has beans or meat in it, he's rejecting it almost altogether. He cries. He turns his head. He won't open his mouth. He won't eat it. And these are foods he was eating, even if not perfectly, for several months.
This is where it gets tricky.
WHY is he not eating? Why is he not eating well?
Is it developmental? He is behind because of the Down syndrome. He's also behind because of all the massive neglect.
Is it the typical food rejection of a young child?
Is it a deeper food issue because of the starvation?
WHAT do I do to help him?
His speech pathologist continues to work with him by doing oral motor exercises. She now feeds him once a week incorporating these exercises into the feeding as well.
She commends me for continuing to feed him lots of foods and textures. But she doesn't have much to say about what we need to be doing right NOW to help him with the food issues.
Do I continue giving him full meals of the thicker, more textured foods and just deal with his rejection and refusal to swallow?
Or do I go backwards and start giving him more full purees so that he'll eat better and the meal is more pleasant and makes him happier.
The last thing I want to do is to turn mealtime into a battleground.
Almost every foster child we've had has brought some sort of food "issue" to the table. None of them have triggered me the way Russell's are right now. Obviously I have to deal with myself here. I've never had a baby refuse to eat though. And it scares me. I don't want to go backwards and feed him purees. What if that's all he's eating when he's 12 years old?!
But I don't like how sassy he gets when he's refusing to eat either. The poor thing was starved for 17 months. I want him to enjoy mealtime. I want him to be happy. This must be factored in to the equation.
His speech pathologist doesn't say much about everything. She just commiserates with me. I guess it's been good that I'm being validated. The way he's eating isn't "right". At least I'm not crazy trying to blow things out of proportion.
But I wish I knew what I should be doing right now about it.
And if y'all tell me to keep on giving him the thicker foods that he's rejecting and not swallowing - y'all had better tell me how to get my head screwed on straight. Right or wrong, it makes me mad. He gets pissy with me with everything I have to do to keep him clean and healthy. (The only thing I don't have problems with is diaper changes.) It wears on me to continually take care of someone and have them reject my care at every turn. Mealtime is personal. Oh so personal. And when he's rejecting the food, it's like he's rejecting me. I KNOW I HAVE TO GET OVER IT. But someone help me reframe it. I can't talk to him about this. I can't reason with him or ask him what he wants. I'm dealing with an infant here. Chronologically he's 25 months old. Developmentally he's well under a year for his language skills and 10-11 months for everything else. I can only relate to him as an infant. No sticker charts. No rewards. Nothing like that. He's a baby.