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.

Thursday, September 17, 2009

Feeding what after jarred food?

Ok, so you guys have given me some good info on Kinlee's feeding for the present. Thanks a bunch!

But let's go one step further...

When she's ready to go from baby food to table food, what do you start with there?

You have to remember that we don't eat real meals or even usually real food in our house. Lunch is whatever I can grab in 3 minutes before M gets home for his lunch hour. I usually throw something together for him and I'm still feeding kids or working on some other task while he's eating. Mac n cheese, LOTS of cereal, ramen (for M), frozen burritos...these admittedly less than healthy foods are the norm for us. This new thing of having a kid who eats "normally" is going to be a full-on change for the whole household. I'm trying to do better lately. I got alot of fresh fruit this last trip to the store and made a fruit salad (fruit only, not added stuff), I bought veggies, but we still haven't used them and I have to do that today or they'll be no good. We are once again on a major no-spend-money month, so I got some basics like turkey and cheese for sandwiches and pasta

Tuesday, September 15, 2009

Feeding this baby--What and how much?

Ok, all you moms with littles... I've never had a kid that eats before, so give me some help.

What do you feed a 7-month-old?
What's the progression from cereal to baby food to _____ look like?
How does the balance go between milk/formula and "other"?

And don't give me the "oh, you'll know...she'll tell you." I don't work that way... need some specifics here!

Sunday, September 6, 2009

Milestone: Or two or three

Kinlee’s been flying through the milestones lately.  I suppose she’s been doing that her whole life.  I can’t get used to it, and I definitely can’t keep up with the blogging that I’d like to in order to document it.  But I’ll do my best in short bits…

She had her first cereal on her 5-month birthday.  She was a fan.  I marveled at the fact that you could just offer her a spoon of mush and she happily opened her mouth. 
I’ve never experienced such a thing!!

She did have a few faces that were kind of funny, but for the most part, she was very pleased with this new element to her routine.

At 6 months, we started introducing some veggies, touched with a tiny little bit of pears to make it a bit more enticing.  She has done great with all of it except the green items.  Those will have to wait a bit more.  She’s a fan of squash, carrots, sweet potatoes, pumpkin, and chicken with apples.

This past week, I gave her the little crunchy things from Gerber Graduates, and I just stared and laughed at how she just seemed to know what to do, and she enjoyed it!  This is so foreign to us with Braska and her feeding refusal.  I can’t believe that a kid can just take food, put it to her mouth, and eat it.  Chewing!  What a novel idea!!

She started army crawling just after she sat independently before she was 6 months.  She’s gotten quite fast at it and she can get anywhere she wants in no time flat. And if that weren’t enough, now the girl is crawling too!  She’s not even 7 months!  Maybe that’s normal, maybe that’s what all kinds of babies do, but I’m amazed at this little crazy girl.  No video yet, but we’ll get some.  She’s still kind of wobbly and slow about her steps, but she does it.

Check out this pic I got this week, it reminded me of another and I looked back on Braska’s blog to find it. 

Same hand-me-down shirt, same BabyLegs, and almost the same weight.  Kinlee is the same length as Braska was in that pic, and she’s less than a pound under the weight that Braska was there.  The big difference is that Kinlee was 6 3/4 months, and Braska was 16 1/2 months. Almost 10 month difference in age.  So funny to me to see how similar and still different.