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Saturday, November 17, 2012

New feeding therapist and a reality check

After a 2 1/2 month hiatus, we have finally found a new feeding therapist. To be perfectly honest, the break has been nice. She started feeding therapy at 5 months old and we both just needed a break. I'm very excited about our new arrangements though. Our very hard working and dedicated OT is teaming up with one of the in-clinic feeding therapists on a few of their patients. We will be seeing both of them on Fridays. We'll start with OT and then go straight to the feeding therapy room. I think this will be a really good thing for Raya and I'm excited to get her back on track with feeding therapy. She's been feeling better GI-wise and I think she's ready to move ahead.

We had our first visit with Miss Heidi yesterday and it went pretty well. Most of the time was spent talking & going over Raya's medical history & feeding therapy history. It was nice to get the chance to start over fresh with a new therapist. We learned helpful things from both of the others we've worked with but it will be good to have a fresh set of eyes on the situation and have a more sensory-friendly approach to feeding. I think in-clinic will be just what Raya needs to get things going. I got Raya to eat some banana by letting her have bites of marshmallow in between bites of banana. She would only take the banana and marshmallow from a spoon, but she took it. We'll be skipping next week since it's the day after Thanksgiving but then we'll hit the ground running after that.

Her GI issues have calmed down quite a bit since we slowed her feed rate way down and have spaced the feeds out more. She's definitely happiest when there's nothing in her stomach. :/ Sometimes in the evening, we'll think, wow, she's really in a good mood tonight! And then realize that it's because we've forgotten to start her next feed so she's feeling good. I still wish I understood what caused the issues with not tolerating feeds or if there was more to it than just the stress of moving, but I'm pretty sure every mother of a tube fed kid has said that same thing at some point. Sometimes there just isn't a good reason or a way to fix it without letting their body work things out at its own pace.

That's part of the reality check I was referring to in the title. A part of me (the optimistic part) had the idea that once we got Raya onto bolus feeds at the maximum pump rate, she was out of the woods. I felt like we were past the worst of it. We're coming up on 2 years since her last hospitalization. She's never been given a unifying diagnosis to tie together all her many diagnoses. There's no syndrome for me to google search and know to be on the lookout for certain symptoms that may be lurking around the next corner. She's no longer underweight and has been surprisingly healthy as far as common illnesses go (knock on wood). As much as I HOPE that we are beyond the worst of it, I have been reminded lately that she is still a child with a delicate GI tract. She may have a healthy immune system, but so do some of our little friends who have gotten sick with colds and flu bugs recently that have landed them in the hospital. Seeing her motility slow down so much just from the stress of moving (or whatever did it to her) makes me cringe to think what could happen if she catches a stomach flu or something. We've already seen what happens when she gets a sinus infection and it was NOT pretty. We wrote into her school health plan that she is at risk for complications from common illnesses and that good handwashing (not JUST hand sanitizer) is very important. I hope that the 3 page medical history I typed out for them will drive that point home.

It's hard not to be paranoid sometimes. She's been a little more calm lately and instead of just being glad that she's having some calmer times, I look at her laying still on the floor in the middle of the afternoon and start going through the list in my mind of things that could possibly be wrong with her.


She doesn't really help the cause any. She drops her ice cubes on the floor and then eats them anyway. I have to not think about it because I'm not always right there to stop her. I believe this next picture was taken just after I said to her, "Raya, stop sucking water up off the floor with your mouth! Get a towel!"


Fingers crossed for a very uneventful flu season, especially now that she's going to school.

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