Fighting for feeding

Ok, so it’s not so much a “fight” but it has felt like it a little in the last couple days.  If you didn’t see the post on Braska’s blog about yesterday’s feeding demo (and if you want things to make sense) you might want to start there first.

Today the goal was to talk to the contact at the school and Sue, a superb OTR/L with excellent feeding skills and experience.  She was our OT for about 3 months at the end of the summer, right before Braska’s transition out of EI.  She is wonderful, as a person, with Braska, and at what she knows as a professional.  I wanted Braska to stay with her when starting school, since Sue works there as well as privately, but the school is set up so that each classroom has an OT who works with the kids in that room.  Since Braska wasn’t in one of Sue’s rooms, we went with the OT in the room.

 Let’s just say that has not worked out the best.

There’s a lot that could be said about that, but I’ll leave most of it alone except to mention that this is actually great timing.  I was only becoming aware of some concerns within the last couple weeks, so a change now is great.

Sue didn’t work with Braska on feeding when she was our OT. This was at our request.  At that point we were still under the impression that Braska’s issues were behavioral, for the most part, and so we weren’t doing focused feeding therapy at that point, trying not to “push her.”  Oh what I wish we’d known then…

Anyway, the good news is, for right now it seems we will be able to make the changes needed to get Braska back with Sue and working specifically on feeding.  We’ll be trying to make this work in Braska’s school schedule on the days Sue is there.  But if that doesn’t work, we’ll possibly go early or something like that to work on the oral motor specifically.  And if all else fails, we will see Sue on a private basis outside of school.  In fact, depending on how receptive Braska is and how it goes initially, we may do both if we can handle it financially. 

We have a lot of lost ground to make up.  But I was so encouraged by the fact that Sue wants to work with her and is sure that it’s not “too late.”  Her muscles can be trained and what behavioral habits have been learned are not too deep to relearn correctly.

We will also be developing a plan to includes Braska’s ST, who we really like a lot.  Ann works so well with Braska and Braska responds well to her. This way they will be coming at the oral motor elements from different directions but working on much the same skills, used for different things.

I’m hopeful that things will be righted soon, and I’m glad to know that we do have good people available.  Of course, I’m still frustrated that we were on a wrong path for what seems like such an important part of her young life, but I have to let that go. 

If I could hang out in NICUs and tell parents in our position NOT to take kids off the bottle completely, even if it just means letting them take 5 or 10 cc with the bottle before tube feeding… oh how I wish we’d have had someone to clue us in…  what a different picture we’d have now.  But it doesn’t work that way.  I can only help those who come behind us, and every child is different, but it’s worth sharing our experience so people can make a more informed decision.

Hopefully, over the next few weeks we’ll see some exciting things.  I acknowledged to Sue that we are willing to take the risk of regression in oral intake to get things done right and help Braska to get where she needs to be in the end. In other words, we may have to take some steps back before taking steps forward. We’ve always been hesitant to have specific feeding therapies because Braska would then refuse to eat for days or weeks at a time after something new was presented in therapy.  But now, I fully believe that we need to back up and do this right.  Teach her the right way to use her mouth and tongue and all the parts around them.  We need to help her eat properly and it won’t be such a difficult thing for her.  THEN maybe she will want to eat as it gets less difficult because her oral motor skills are better.  So if we must rely on the G-tube solely for a while, so be it.  She’ll get her nutrition and we’ll start the journey to being rid of the tube eventually. 

A journey I thought we started long ago, but we were following the wrong map.

***As I was proofing this, the school called.  They are willing to check out the options, create a plan, and help us make some changes to get Braska the therapy she needs.  The ball is rolling…I’m so glad for that. 

****Oh my goodness.  As soon as I posted this, the school called back.  They already have discussed with appropriate people and we have a plan in place.  Woo Hoo!!!  Sue will be handling the oral motor part of Braska’s OT (30 mins a week) and the classroom OT will be handling the fine motor part (also 30 mins a week).  I’m pleased with this and I hope that it works out as well as I expect it to! Yay! 

Thank you, God, for presenting and then solving a problem I wasn’t even aware of…and in short order.  Awesome!

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.

Princess Eliana

We have about 40+ blogs that we keep up with for kids and families with DS. I often say that the blogs have been our lifeline, and I have most definitely learned more from them than any medical or "official" site. So many of you have become like "real" friends, and it feels like we just never get to really hang out! I appreciate all the emails and behind the blog stuff that we share with so many of you... that makes my days brighter every single time.

I could list all the adorable kids who make me smile and it could go for days... but today I want to pick out one little gem. Miss Eliana is a princess who has traveled much the same road as Braska, and her mom Leslie is a marvelous example of a great mother and a kind and caring friend, it's clear. Eliana was born about a month after Braska, she had similar heart issues, she had a G-tube for a while, but she has blossomed into just an absolute doll who is wowing lots of people and especially her family who adores her.

Yesterday, Leslie posted a couple of pics, both are beautiful, but one of which just stole my heart. It captures what I imagine is Eliana's wonderful personality and obvious spunk. Even though I've never had the pleasure of meeting them in person, I really am thankful for the influence they've been on me in the logistics of the things we've been through and the encouragement it is to watch Eliana do so well.

Take a minute and go see Princess Eliana. She is one very special gift from God. And please give your little ones a hug for us too... we wouldn't be nearly as sane without all of you blogging buddies!!