Remember this picture from my Hippotherapy post?
That circled part of the brain is the cerebellum. The portion of the brain that plays a large role in motor control. Ainsley's is undersized as you can see. That's called Cerebellar Hypoplasia. Eating is in fact not simple but a complex motor function involving coordination of the tongue, lips, cheeks, jaw, throat and esophagus (though that's mostly automatic). It takes a lot more effort than you'd think. If you eat wrong it can result in food going down the wrong way. We all know what that feels like and it happens to even the most experienced of eaters from time to time.
If you think about it babies aren't born able to eat table foods. And once they can eat smooth baby food you can't immediately feed them hamburgers. They master one type of eating and then move on to the next type and so forth until they are proficient eaters. It happens quickly because they have brains that learn easily and muscles that are easily controlled by their brains.
For Ainsley, because of CH, any motor skill (which basically means everything you do with your body) is more challenging. The more complex it is the longer it takes her to learn. And to build strength and endurance. If her muscles get tired she is "at risk" to aspirate, i.e. food going down the wrong way. So she stops eating. Makes sense right? It is hard work for her to learn to eat. And she's not hungry because we tube feed her.
In order to stop tube feeding her she has to be able to eat.
And she won't learn to eat so long as we are tube feeding.
See the problem?
Plus she has a trach, which makes it harder for a number of reasons. It's not why, but a part of the reason.
She also needs a lot of calories because she has a high metabolism due to the effort it takes her to do things. More calories = more food. A problem for a child who can't eat. We don't want her to be skin and bones. That wouldn't help her with motor skills.
All of that.....that is why she is tube fed.
So we work at it. Because we don't want to tube feed forever.
Progress is slow.
And she often regresses.
It can be VERY frustrating. Because it takes a lot of time and work for me (selfishly).
After 6 years of experimentation and trying e.v.e.r.y.t.h.i.n.g I've learned a few things.
- First she has to be hungry to be motivated to eat. Duh! But seriously it makes all the difference.
- Second is that I try my best to let her set the pace and not pressure her. Yet sometimes I have to force her to do what she doesn't want to do like eat just a bit more to increase endurance. A contradiction for sure. It's a delicate balance. I try to keep in mind the immensely enlightening article: Everything Is A Grasshopper by Marsha Dunn Klein. Forcing a child to eat something they find repulsive will backfire.
- The third thing is that whatever my plan is, I have to be flexible and willing to scrap it if she shows me my plan isn't working for her. She might be doing great orally and then get sick (not from aspiration) and she just stops eating completely and we have to start back at the beginning when she is well. Or she might be doing really well but just can't get to the next level so I'm forced to stop. Sitting at the table for an hour and a half, day after day, can only last so long before I have to throw in the towel and admit it just isn't worth it.
If you feel an announcement of some kind coming on, you would be right. It's more of an inchstone than a milestone. Did you see those awesome Trader Joe's alphabet graham cookies up there? Or down here?
Would you be surprised to know she ate them?
All of them.
Yeah I thought so.
Would you think it was pretty cool that she signed when she wanted more? And then ate them all?
Yeah I thought so.
Or how about that she actually ate a few bits of chicken nugget (even cut it with her fork), mac n cheese shells and peas?
As in put a pea in her mouth, chewed it and swallowed?
Yeah, I thought so.
You may or may not know I've been taking her to see an SLP since June of 2012? We opted to do this instead of an intensive feeding program because we felt she needed to work at a modified pace due to the CH issues. During the summer I was able to work with her a lot but had to back off when she went back to school.
As part of our therapy (in the office and at home) we've been doing oral motor exercises, jaw bite blocks, and trying to increase her ability to tolerate textures. I think working on the jaw and the ability to close her mouth has been very beneficial. Although she was being tube fed we were also offering lots of opportunities to eat throughout the day. She still did much better with smooth purees or munchables and not mixed textures so we tried really hard to work on that but didn't make much progress. But really, who wants to eat graham crackers mixed in applesauce? Nobody. Interestingly her favorite food to eat is tortilla chips which you would think would be the hardest thing to eat because they are so dry and hard to swallow. She will cough sometimes but she keeps going back for more. Sometimes she gags on thick yogurt and won't eat another bite. It doesn't always make any sort of sense.
That's why I was so surprised when this week she was willing to try eating a few bites of roughly blended spaghetti and meatballs. I've tried this SO many times over the years, only to get the result of gagging and retching and complete rufusal. SO THIS IS HUGE PROGRESS!!!
And then tonight she ate this:
Left over homemade beef stew.
Then when she'd eaten a bit but was tired I pureed it some and she ate a little more:
Look at those chunks! Then she told me with her communication device several times to "warm it up" (in the microwave).
Then that it was salty.
Then that it was salty.
Then that she "didn't want anymore".
And that she "needed a drink". Which she did. She always likes water more than milk.
And then after all this I pureed it completely smooth and she ate a few more bites, before I then tube fed what was left.
And THAT is how a meal really can take an hour and a half.
Did you notice my nifty mirror? I finally found a decent mirror for our oral motor work. The base can also be used as a handle and because it's bulky it's quite stable. The idea of the mirror is that it helps if she can see what her mouth is doing while she is eating. My last one broke. I've been wondering....Do you remember those big rectangular stand mirrors from the 80's? Why can't you buy those anymore?! And if you have one you aren't using, can I plllllease have it? Call me stubborn. I'm just not going to spend $79 for this one even though I ought to since I've spent SO much time trying to find a $10 alternative. (And it used to be $69. It keeps going up in price!)
You might be interested to know eating really helps prepare the muscles for speech by strengthening the lips, cheeks and tongue. It's hard to speak if any of those muscles are weak and eating is the best strengthener. On April 8th we started her on a somewhat reduced blenderized diet. Instead of 4 feedings we are only giving 3, plus oral snacks. I've seen some real improvement over the past week or so because she is now HUNGRY and as a bonus I'm also hearing her make some new and louder sounds. Both while she is eating and while she isn't.
We've been in a tough spot because she has been bored of the blenderized formula that is more nutritionally complete (includes all the food she might eat in a day in one blend). So instead of making one daily blend I am trying 3 different flavored blends for breakfast, lunch and dinner. Time permitting I puree the actual table foods she attempted to eat orally and present different textures. Even though I've done this type of thing so many times over the years this time it feels different.
Ainsley had her IEP this week and I just found out she hasn't been sitting with the rest of the class during lunch, but was at an adjacent table with other kids who (mostly) have feeding difficulties. Sometimes she was being fed in her wheelchair even though she isn't wheelchair bound and sits quite well. I deduced this by the fact that I'd washed the wheelchair last week and found it covered with food. 1+1=2, you know? Aside from the mess she should be eating with the bulk of her class, even though she is tube fed and is too slow to snag a spot at the table (they only have space for approx. 80% of the kids so 20% sit at the big table). So I've asked that it be added to the Special Accomodation section of her IEP. With any luck they will figure out a way to work this out quickly and maybe we'll see some further growth in her eating skills if she is motivated by eating among her peers. Which I think she will be. It's a total bummer to have missed 7 months of this opportunity, but better late than never.
Maybe, hopefully, I've devised the perfect feeding plan this time. Only time will tell, but I'm optimistic. Hopefully I'll have the energy to keep it up. It takes a lot of work. But I'm trying to keep my eye on the prize which would be no more tube feedings.
In case you want to hear her new loud voice watch this: