Wednesday, March 10, 2010

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!

6 comments:

  1. Yeah God! Can't wait to see her progress with the new therapy.

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  2. I knew God was orchestrating something when this whole opportunity fell into your lap! He's so awesome. This is so extremely interesting to me, I'm so glad it was caught and I understand your frustration that it wasn't caught earlier!

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  3. In case it's helpful, I wanted to mention that the Oley Foundation has a bunch of resources for parents trying to teach their children to eat after being dependent on tube feeding. It includes a list of feeding programs nationwide.

    Go to our Tube Feeding Tips page and scroll to the bottom to the "Weaning" section: http://www.oley.org/tubetalks.html

    Good luck!

    Roslyn Dahl
    The Oley Foundation
    www.oley.org
    dahlr@mail.amc.edu
    (800) 776-OLEY

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  4. I know what you mean about wanting to hang out in NICU to tell parents not to eliminate all oral feeding. I'm not even sure why, but I knew that would be a big mistake with Moise, way back when. His doctors and I went nose to nose. They said, "nothing oral", I said, "He's getting oral feeds." My arguement? With his level of diabilities he would lose ability to swallow even his own secretions, he'd have no reason to want anything in his mouth, ever. There would be no oral stimulation, etc. We fought hard and won. I can't imagine the feeding issues we'd have otherwise. Oh that we could share with all parents of special kiddos.

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  5. I'd love to be in contact with you about all of this. It's been a while since I visited yours and Braska's blogs (life, you know...) but I've been thinking of you a lot. I HATE the feeding aspect of life with Micah. It's stressful and overwhelming sometimes. We like our new SLP (she's a self-proclaimed "continuing ed" junkie) and she's working with Micah on PROMPT these days. Have you used that with Braska?
    Would you consider emailing me? I put myself on Braska's email feed. It would be great to share experiences.

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