The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

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.

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.

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