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Tuesday, January 31, 2012

Feeding therapy with a fresh perspective

We are enjoying a much more normal week this week after last week's crazy schedule. Raya had feeding therapy at home today and it is SO nice to not have to drive her to all of her therapy appointments. This therapist was sick last time so we haven't seen her in almost a month, and boy did we have some things to talk about. :)

I started out with the positive things, like how Raya had a whole week of 250-350 oral calorie days, the fact that she will now eat a 4 oz container of YoBaby whole milk yogurt (100 calories/4oz) and can now do it in less than 45 minutes, and that I can give her more than 1 tablespoon of "sour cream" (plain Greek yogurt) at a time without her smearing it everywhere. All of those things are progress. :) She will also eat Gerber vanilla custard pudding with bananas, strawberry nutrigrain bars, and small amounts of pasta (but only if it's cold). It's exciting to see the list of food she has eaten more than once get longer.

We discussed the visit that Raya & I had with the dietitian. I talked about it with our other feeding therapist last week too and all 3 of us are in agreement that Raya (and the rest of her family) are not at a point where an intensive feeding therapy program is the right thing to do. There are a lot of reasons for that but for me, the main thing is that none of us feel like Raya has had enough time to make up for the lack of typical oral development that she missed out on during the 18-ish months that she was vomiting instead of eating. She is still making peace with food and learning that food is not going to hurt her, and I feel like she deserves a chance to form that positive relationship in her own time and at her own pace.

Today's therapy session involved playing with food and having fun. I loved watching Raya & her therapist interact with each other. Raya had so much fun. They started out with a glob of hummus on the table that they ended up fingerpainting with. Then they used pita chips to draw pictures in the hummus. Every now and then, Raya would take a little taste off of her finger or the pita chip. She still won't bite a chip or cracker if it has something on it (peanut butter, hummus, yogurt, etc.) but she will eat them separately. As in, if she thinks there's even a tiny speck of something on it, she has to have a new chip. :) They talked and laughed and Raya copied EVERYTHING that her therapist was doing. It was comical the extent to which Raya was copying her. Raya also got to taste grapes for the first time today. She liked them, but we figured out pretty quickly that if we don't peel the skins off, she isn't able to move them around in her mouth & swallow them. She does most of her chewing in the front of her mouth and that makes it really difficult for her to swallow the food, even if she gets a drink to help wash it down.

I don't know why, but for some reason our appointment with the dietitian really REALLY got under my skin. I was in a funk for several days after that, and I'm not usually affected like that by Raya's appointments. I feel like I have worked hard to learn what I need to know in order to understand why Raya's doctors & therapists have put their treatment plans in place. ALL of us have worked hard to be on the same page with each other. There has been give and take, and all of it has been moderated through me as Raya's primary caregiver. She has been my full-time job for 2 years and even though there are days when I feel like I don't know what I'm doing, don't do enough, and that we're fighting an uphill battle, I do also feel like I've done a pretty good job managing her care. I also understand what the expectations of the other members of Raya's health care team are and I do my best to stick to them. Then we add a new person into the mix and instead of "joining the team" so to speak, they kind of "upset the fruit basket". :) It has been a valuable lesson for me though. There will be times when a medical professional's opinion doesn't align with mine and that's okay, but it's also okay to let that person go and not stress out over the difference in opinion

The plan going forward is to keep doing what we've been doing by continuing to introduce new flavors and textures as often as Raya is willing to accept them. She's been doing great with this lately and just needs to keep practicing while her skills & development catch up. The tone of this visit was exactly what I needed. Sometimes I feel like having the therapists come and tell me how awesome I am (ha ha:) is just as important as having them work with Raya because when I get discouraged, it's REEEEALLY hard to see the light at the end of this tunnel. I know that at some point Raya won't need a feeding tube anymore, but it's SO hard to imagine that most of the time.

I've never climbed a mountain, but I imagine that this must be a little bit like what climbing a mountain is like. I watched a show about climbing Mt. Everest and the thing that struck me about it was that the person who was doing the climbing literally could not have made it to the top of the mountain AND back down without the help of a whole team of people. There was a group of sherpas who climbed up before everyone else to put out new guide ropes and carry extra oxygen tanks to certain points along the mountain. There were people who waited at the different camps to help tired climbers prepare for the next stage of their climb. There was an experienced guide camped out at a point on the mountain where he could watch his climbers with binoculars and communicate with them by radio to alert them of impending danger and coach them along the way. There was even a doctor waiting at the bottom of the mountain to assess & treat their frostbite. In the end, the climbers had to make the climb under their own power, but they could NOT have done it without the help and support of everyone else. I have no plans of climbing an actual mountain but we are definitely climbing a figurative one and I know that we are very blessed to have the team that we have coaching & supporting us through the process. We definitely couldn't do this without them.

And last but not least, I saw this quote today on a facebook page for people who do blenderized diet and I love it because it applies SO well to teaching a tube-fed child to eat.

"A crust eaten in peace is better than a banquet partaken in anxiety."
~Aesop

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