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One step forward, two steps back

The good news:
  1. Raya's sinus infection seems to be clearing (WHEW)
  2. She's sleeping MUCH better this week (knock on wood)
  3. She's not nearly as crabby (knock on wood)
  4. She hasn't had a fever since Wednesday
The not-so-good news:
  1. She has lost all interest in food again and spits out anything she does put in her mouth
  2. Her OT moved this weekend so we are now without OT for the time being
  3. Antibiotics give her diarrhea, even if they're just the 5 day ones
I found it ironic that during Feeding Tube Awareness Week last week, Raya went out of her way to make sure we were very aware of her. Our suspicions/fears were confirmed that getting sick and vomiting would lead to her feeding aversion making a reappearance. Last Monday she ate 2T of plain Greek yogurt and then she didn't eat (as in swallow) anything else until today. She's been asking for food all week but whenever we give it to her, she pokes at it a little and says she doesn't want it. Today her darling respite provider got her to eat 2T of the yogurt and a few nibbles of peanut butter, some of which she spit out. Hopefully she'll get back to where she was before she got sick.
Even though I had expected to see her go backwards a little if/when she got sick, I have been surprised at the degree to which she's done it. I'm not sure which influenced her to stop eating more, the sinus infection or the two times she vomited. Either way, it has shocked me at how quickly she has reverted back to not wanting anything to do with eating.
She does seem to be feeling a lot better. She's been sleeping MUCH better at night and has been napping more like normal during the day. The down side of being on a liquid diet + being on antibiotics + just being Raya is that even though we went with zithromax instead of one of the 10 day antibiotics to treat her sinus infection, she has diarrhea. I've been giving her Florastor (a probiotic) to help with that. Today is her last day of zithromax too so that should help.

We said goodbye to our wonderful OT on Friday. We are sad to see her move away and grateful for everything she's done for Raya in the past 13 months that she's been working with her. Raya will be really ticked at me on Wednesday when I don't take her "fwimmeen wih Bih-duh-dith" (swimming with Elizabeth). She has LOVED doing pool therapy for the last 6 weeks. (well, she might not have loved the first week or two, but she loves it now :)
She loves playing with toys in the pool!

Standing on the big hippo floaty thing

Last day of "fwimmeen"

We've also been doing in-clinic OT with Elizabeth since last January. It took Raya some time to adjust and make it through an OT session without having a meltdown and/or puking, but she LOVES going to OT. So does Kaida. :) The girls get to do all kinds of fun things like:
Crawl through the tunnel (which has always been one of Raya's least favorite things)

Stack blocks (Friday she wore a SPIO compression vest for most of her session. I think it looks like a SWAT team vest. :)

Pet Sugar the goat's bum while saying loudly, "Bum!"

Find the heavy ball in the ball pit (It took us MONTHS to get her in the ball pit!)

Get a puzzle piece, crawl across the mat, put the puzzle piece in, crawl back across the mat, & repeat

Climb over things while being irresistably cute

We ♥ you, Bih-duh-dith! :)
We're kind of in limbo with OT at the moment. We're keeping our fingers crossed that the clinic we've been going to will either have an opening with another therapist soon or else hire a new therapist. We might also find a home OT since we are technically approved for 2 hours of OT per week. In the mean time, we'll try to keep up with our home program and see what happens when Raya goes without OT for a while. :)


  1. I bet the sinus infection did a number on her taste buds. Thats what happened to me. My formula tasted even worse than before. Sinus infections are so gross and effect everything, even in me :)


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