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!

Tuesday, March 9, 2010

Mommy report: Feeding demo/eval

You may have seen over here that we were recently scheduled to do a demo for a feeding therapy seminar that was held nearby.  Well that was today, and it was quite an experience.  A good experience, and yet one that leads to frustration…  let me explain.

Lori Overland, MS, CCC-SLP was the speaker, and the seminar was promoted by Leaps and Bounds, which is a therapy facility here.  We were to fill in where there was a need for a child with problems moving food around and maintaining liquids in the mouth.  What a good fit!  I was anxious that Braska might not cooperate in a group setting, but we went ahead and said we’d do it. 

We arrived a few minutes early, Braska got to meet Lori and play with her a bit while Lori did some visual eval and observed for a few specific things.  She tried a couple skills with her and shared some initial thoughts.  Immediately, she noted problems with Braska’s oral motor skill and strength.  This might not be a shocker to some of you, but the difference is that she pointed out things that we’ve not had anyone else mention before, or at least recently.  I had told her that we’d been led to believe that Braska’s issues were behavioral at this point, her refusal to eat being just that—refusing.  We haven’t worked on oral motor skills in over 18 months with any real intention, either in therapy or in general.  I always believed that since her speech is so good, and she can make all her sounds correctly, that her oral motor was not the biggest problem.  She is able to take food in and swallow it with no problem, so I just operated on the idea that she could eat if she wanted.  I know she can’t chew, she never has, so I figured we’d need specific work on that, but I wasn’t sure where to get it.

In less than 15 minutes of observing and working with Braska, she noted and explained numerous things that were “obvious” and pointed toward specific therapy needs.  I was relieved to know that there was something that could be done to help her, but I was amazed that we’ve not heard this from other therapists who worked with her quite a while.

We put Braska in her feeding chair, and Lori began to do the demonstration for 65 or so OTs and SLPs who were in attendance.  She tried a variety of things, like massage and vibration, to stimulate Braska’s mouth and face and prepare it for feeding.  Braska did pretty well overall, and she accepted this interaction better than I would have expected.  She didn’t like the alligator jiggler as much as she used to back in the day, but for the most part, she cooperated.  She did not want to bite things when asked, like the chewy tube, but that wasn’t really a surprise.

Lori tried to work on the inside of her mouth, on her tongue and cheeks, but Braska was not really having that.  Again, this isn’t new for her to avoid that type of thing.  I fed her some yogurt while the whole group watched and commented or asked questions.  Lori showed what things were indicating issues.  The position of her jaw, the way she led with her tongue instead of her lip, the way the top lip stayed up instead of coming down to meet the spoon properly.  She also noted things like how long it took Braska to swallow, I guess meaning that she had to work hard to get the food or liquid back there.  She also offered her some water in a honey bear, but Braska was not really interested in that so much.  She wouldn’t really open her mouth.

Braska is so finicky about who she will warm up to when it comes to working on feeding or around her mouth.  She is very quick to shut down around several therapists we’ve had, and it was amazing to me to see how well she did with Lori.  I really wish she didn’t live and practice in Connecticut!

We are proud of how Braska has done with her speech and language.  She does extremely well for a child her age with DS in the area of speech and language.  But Lori pointed out that, though she is speaking very well,  she could be even MORE clear and proper in her speech if we could work on these oral motor concerns.

Lori also felt that some of her feeding issues, at least currently, could be due to her ears and enlarged tonsils and adenoids(T&A).  I’ve heard from other parents who found that after their child had the T&A removed due to sleep apnea concerns their child also showed improvement in her feeding issues also.  Lori felt due to Braska’s noise respiration and apneic episodes that she’s having more frequently that she probably would show progress after the T&A were removed.  Braska is scheduled for a sleep study on 3/23 at which time the decision will be made about if they will take out her T&A at the same time that they put in her ear tubes.  The combination of these things will likely bring positive results to the feeding situation.  She also noted that it might be related to her tendency to sit with her head back, chin up, so frequently.  This could possibly be a position that allows for the most open airway.  We’ll see what the sleep study shows and go from there, but it’s encouraging to think that we might be on to something that could really make a difference.

As we left, I was happy that we’d found a direction to take to help Braska, and at the same time, I was really kind of mad that we’ve gone this long without this being stressed as important.  How have we had all these professionals in and out of our home and involved in her transition and evaluations and no one brought up that she needed focused oral motor therapy??  Now that we’re out of First Steps (EI), this will be all on us to take care of.  Insurance doesn’t cover it unless there is a medical diagnosis, and I don’t know that we’ll have a valid one right now.  So if we seek private therapy to correct the bad habits and learn the proper ones, it will all be out of pocket.  If that’s what we need to do, we will do it.  Money will not be the reason she doesn’t learn to eat properly.   I’m just frustrated that we’ve gone this long operating on flawed assumptions.

Where do we go from here?  Well, we start tomorrow by talking to the school and making some changes to ensure that the right people are working with her.  The good news is that there is someone who knows what to do and who Braska likes very well.  The bad news is that there is a policy in place that makes it hard for us to be able to have her work with Braska.  But I think we can work around it or run right through it.  If all else fails, we can see this person outside of school in her private practice, and that’s what we’ll do if we need to.  That’s where we’ll start…  it’s going to be a long road, but at least we now know where we’re headed.

Saturday, March 6, 2010

New experiences coming right up

(This is a scheduled post…so I’m writing it Friday night, but you won’t see it til Saturday.  That’s because I want to be sure you have time to see this post with the exciting news!)

Tomorrow/today (Saturday) I will be spending the day at our local/regional DS conference.  The DSAGSL puts this on each year.  I’ve never gone, for a variety of reasons.  But this year, thanks to my buddy Adrienne, I ended up on the planning committee along with Julie. Both of us first-timers, and kind of representing the “moms of younger kids” set.  I also was asked to be part of a workshop with a parent panel on the process of doing the first IEP, transitioning from Early Intervention to the school system.  So tomorrow will be a busy day, one that I am expecting to be exhausting in a few ways, but I hope that it will go well for those who come.  I really hope more are in attendance than what it sounds like there will be.  Julie is picking me up at 7 am. Neither of us like to be up and presentable at that hour.  I believe some caffeine will be involved.

Then on Tuesday morning, Braska and I—more Braska than me—will be “the entertainment” (or the lab rat) for a demonstration by Lori Overland, all the way from Connecticut, at a seminar for therapists here.  Braska will be exhibiting her trouble moving food around in her mouth appropriately and her struggle with liquids remaining in the mouth when she tries to take a drink.  I’m really looking forward to this because Lori is a very well regarded expert on oral-motor issues and feeding, and we get an evaluation and recommendations from her for Braska as a “Thank You” for volunteering.  (Worth like $600!)  I’m all for any expert help with feeding!! And I love that we can be a part of helping people learn about issues that a tiny part of an already small population deal with daily. It was really neat how the kiddos who were originally scheduled were unable to attend and we jumped in to fill a need at the last second…just setting this up today!  Can’t wait to see how it goes.  I just hope Braska cooperates with what they need.  I do have to give a bit of case history to the group, so that will make me nervous, but I’ll make it.  It’s been a while since I’ve had to speak to a group of healthcare professionals, but I think I can remember how.

So it’s going to be a busy weekend around here—I already had an event tonight that I helped with at church, conference tomorrow, Father-in-law’s birthday on Sunday, couple appointments on Monday, and oral-motor seminar on Tuesday—I think I’ll have quite a bit of new and helpful information by the time I get to sit down, breathe, and process it all.  I’ll be sure to share.