Friday, September 25, 2009

Mommy report: Update, part 1--Feeding

Dishes, showering, laundry—all on hold. I just can’t keep putting off an update on this girl or I’ll forget all this before I can get it down. Since this is my main record of Braska’s goings on, it’s important at this stage.

We’ll start with feeding, and there will be at least a few other categories to follow soon.

To refresh for anyone who might be a newer friend here on the blog, Braska doesn’t eat orally, not regularly, never has. She has a g-tube/button, and she gets all her nutrition via Pediasure through her button. She has no medical issue that causes this problem. This is not a “Down syndrome thing.” She chooses not to eat. She does not show hunger or thirst, and she couldn’t care less if she eats or not. This is a behavioral issue. Even with our ability to feed her without her help, she still has always been underweight. At 34 months, she is just under 22 lbs. Because her weight is low, we cannot do more stringent caloric challenges (holding back on nutrition/food/milk, causing her to become more physically hungry and want food) because she’s not got any weight she can afford to lose in that process.

[Edited to add: Because Braska insists on being different, her oral motor is NOT as poor as one would think for a non eater. As most of you know, her speech is extremely good and she does not sit with her mouth lax or open, and her tongue is generally in her mouth with her lips closed. Our first speech therapist said her great jaw strength is due to the fact that she spent all her time keeping her mouth clenched to resist food. Ha!]

The day Kinlee was born, Braska ate some pudding, if I remember correctly. But she ate that day, and the following days. It was very small amounts at first, a tablespoon or two on a good day. Sometimes only a spoonful, but we offered it and required that she eat something a couple times a day. After about a month, she was eating fairly consistently at the 2-3 tablespoon mark, usually twice a day. We started up again with her nutritionist/feeding specialist, and I could tell immediately that it was not going to be a good thing.

You see, the smallest thing can change her course when it comes to feeding. A strange person present during feeding, an unpleasant experience because she’s too tired. A little choking sensation, though recovered quickly, can ruin her for days. When the nutritionist came that day, I had a bad feeling. She’s not a bad person, but I just had a gut feeling it was too soon for Braska. And I was right, unfortunately.

She refused to eat for her, and she then refused to eat for me for the following 3 weeks. Yep, it can go just like that. She decides she won’t eat, and that’s it. There’s no “oh, she’ll get hungry and eat” thing. She can go days without food or drink and still not ask for it. She’s shown that by ending up in the hospital when she was younger. Super stubborn is her thing.

With alot of work, we got her back to eating a little, and she has continued to progress slowly. We cut out her feeding time with the nutritionist, and made those visits only about making sure she was getting enough and doing a weight check. This has gone well.

Most recently, she’s been surprising us with how much she is accepting. Generally, her habit has been to just taste things. She would accept as much liquid (like a sauce or something) that would remain on a fork. Not much. But taking quantities of food has never been something she’d do. She also has always been a high-flavor girl, preferring tastes that are very spicy, highly seasoned. Nothing as bland as baby foods or unseasoned vegetables.

But lately she has been taking baby foods, straight from the jar, sometimes with added fat and calories from various sources. And she has taken an entire 4 oz jar at a sitting on several occasions in the last couple of weeks. That’s a BIG deal around here! She is also becoming much more willing to take whatever is offered. She hasn’t really rejected a food in a while. She’s also taking sips from a sippy cup with no no-spill valve in it. Very small sips, but it’s something. No straw, no open cup, and of course, no bottle.

She still doesn’t ask for food. She will not remind us that it’s time to eat if we’re busy and don’t offer solid food. But she’s accepting it when offered with greater consistency. Sometimes she will still get obstinate and not want to open her mouth, but she can be coerced with minimal work. That’s great progress for her.

Textures and self feeding are still a long way off. She only takes pureed foods, yogurt, pudding, with the most textured accepted food being baby oat cereal with Pediasure or juice. She takes it a tad thicker than Kinlee does, but still not that challenging. For now, we’ll continue to work on quantity. Soon we’ll try to address textures, attempting to chew (which she will NOT do at all), and self feeding.

Feeding issues are so frustrating. And I’ve yet to find any other kid who is as old as Braska, has no medical issues related to feeding/digestion, and still refuses as thoroughly as she does. It’s not like she only eats 5 things, or she only wants PB&J with crackers for breakfast, or she won’t eat her vegetables at dinner, or even that she’ll only take a bottle. It’s lonely in this kind of position, and there’s not alot of info out there, but that makes our progress even sweeter.

We know very well that she could decide tomorrow not to eat for days, weeks, or months. We always rejoice with a bit of a guarded sense. But I’m glad she’s come this far. We’re working very hard to protect the experiences so that we don’t suffer any setbacks. I’m proud of her that she’s come to this point.

Stay tuned for update, part 2—gross motor.

3 comments:

  1. Wishing you the best with this.

    Do you read the bridges Bunch? Carsten is younger, but he is currently at the KKI Institue (Maryland?)?

    http://thebridgesbunch.blogspot.com/

    Also, Graz University Hospital, where Vince has a lot of his therapies is also one of the world famous places for getting kids to eat. There was a movie made from here that was called something like The Girl Who would Not eat. I have not seen it, but mny who come here have.

    About two years ago I got in touch with a lady from New Zealand who was coming to Graz to do the program. Her son has DS but he also had some epileptic issues. I am not sure how that affected his eating, if at all. Anyways, he was over three when he came. He ate NOTHING before. They ended ups taying for about 5 weeks and he ate some puddings, and some lighter texture foods by the time they left.

    If you want me to, I will dig through my emails and find her email address?

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  2. Feeding issues are so hard. Trust me... I get it. It's hard to explain to anyone who hasn't been here that it just plain stinks to not feel like you can feed your own child. And it's really hard having to worry about controlling every environment when it comes to feeding time. We haven't been at it as long as you and Braska, but we definitely have a long road ahead too. You're doing great!

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  3. I'm here if you have any questions about KKI. I saw your comment on my blog. It is a hard road but not an impossible one, just takes tons of PATIENCE and determination. Don't give up, fight for what you know she needs. We had to fight our insurance over a year to get here but finally got in. It's going well, of course they're not miracle workers but he's making progress and they know what they're doing. If I had any advice before coming to one of these places I would say get the reflux under control, work on chewing skills, and drinking skills. That's where our main issues are. They use a behavioral analysis system that's proven. I also looked into that one overseas but it was too far obviously:) Warm wishes and blessings with your little one. My email is kariabridges@gmail.com if you ever have any questions.

    Kari

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