A yucky week

So in the midst of Feeding Tube Awareness Week, Raya has done her best to make sure that we are very aware of her presence. :) Last Saturday she had started to cough a little bit. Mostly just after she heard her older sister cough, but by the evening it sounded less fake. Sunday morning she woke up with a fever of about 101 and definitely had a real cough, but by the afternoon the fever was gone. That's pretty much how it went all week. She's had fevers off & on and she's had some strange things going on as well. Like how she's not sleeping. Monday afternoon instead of taking a nap, she did this:


 And yes, those are her jammies and it's 2pm. Beside the point. Anyway, I heard the pump beeping and when I walked in the door, the poor little pump was laying on the floor with the screen flashing "Shut Door...Shut Door...Shut Door..." It might as well have been saying "HELP ME!" because she broke the door off. Lucky for her, it went back on and stayed.
Usually at night she goes to bed around 6:30 and then wakes up around 10 when we give her the night doses of her meds. Monday night she woke up at 8:30 and didn't go to bed until 1:30am. Goodness knows when she actually went to sleep. She was still throwing fits when I put her in bed but I couldn't stay up anymore. (I'm getting too old for this.) Tuesday she took a short nap in the afternoon and did the same routine as Monday night only with more fit-throwing. At one point around midnight, she was sitting on the living room floor yelling that she needed her blankets (which were on her) and in the middle of it she yelled, "I wanna watch Cake Boss!" Then she got mad because I laughed really hard.

She did finally get a decent night's sleep on Thursday night, thank goodness, but she's crabby from the minute she wakes up unless I'm near her but not touching her.
One of the strangest things she's had going on this week is when she randomly has a part of her body turn red for no apparent reason. It's usually her left cheek. On Wednesday she went to pool therapy (her last pool appointment with Miss Elizabeth...so sad!) and aside from the cough was fine. All afternoon, her left cheek was bright red. Then her left cheek and left ear were red, but she didn't have a fever or anything. We picked the kids up from the bus stop and she was still fine, but then all of a sudden at 4:30 she had a fever of 103 and both cheeks & ears were bright red. Not only that, but her arms looked really splotchy. Not a rash-type splotchy, but it was more like under the skin, blue/purple/red splotchy. SOO strange. Her arms & feet were cool to the touch even though her fever was 103 too.
Thursday I took her to the doctor since she'd been having the low-grade fevers off & on all week, a gross sounding cough, & had been MISERABLE to live with. It turns out she has a sinus infection.

Fortunately for me (because I stink at giving 10 day antibiotics), her doctor didn't dare put her on a 10-day antibiotic due to her history of c. diff and all her other GI issues. She didn't want to risk having her get diarrhea from the antibiotics, so we're doing a 5 day zithromax instead. Hopefully it will do the trick because I need my sweet, darling 2 year old back. She has been a moody emotional mess all week, poor girl.

The biggest thing this week has been that her sensory issues are ragingly out of control. It's always been that way for her. If there's any disturbance in her body, she's a mess sensory-wise.

A couple weeks ago she was up to eating 350 calories per day a couple times and averaging over 200. This week she's eaten zero calories since the 2 tablespoons of sour cream she ate on Monday. She didn't even take more than a luck or two of the dum dum she got at the doctor's office today even though she was excited to have it and couldn't wait to open it. This is EXACTLY why we've chosen not to take her to church all winter. Getting sick has a ripple effect on Raya and now here we are, back to square one on getting her to eat orally.
She also broke her 7.5 month no-vomiting streak, which was a bummer, but also reassured me that she's still capable of vomiting if she needs to. I was starting to wonder. :) Since then, she seems to be even less interested in food. Last night she chewed up some french fries but then spit them out. All over me. She got out a yogurt this morning and even opened it herself, but then she carried it back to the fridge and put it on the shelf without eating any of it. It's like she wants to eat but she's afraid to. Hopefully the reason she's not eating is just the sinus infection and not that she's afraid of food again. I hope once she feels better, she'll start eating again.
In addition to the oral aversion coming back, she can't stand having anybody touch her arms & legs right now, which was one of her big sensory issues back when we started OT a year ago. We had our last visit with Miss Elizabeth today (seriously, I had to make myself not cry when we left) and even she had a hard time getting Raya to let her touch her legs & arms. That hadn't been much of an issue at OT for a long time. The poor girl just seems like she's crawling out of her skin and can't get comfortable or relax. That must be an awful feeling.


That handsome looking black thing she's wearing is called a SPIO compression vest, by the way.

Her balance has been a little off, probably due to the sinus infection & its effect on her vestibular system, and she's just having a hard time coping with anything & everything right now. This afternoon's PT session was a total joke. Raya wouldn't let Jessica NEAR her. She spent the whole time trying to run away from her. I'm not even kidding. We went to the park and ended up doing a lot of hide & seek behind bushes, which only accomplished getting Raya to practice walking on uneven terrain.

Jessica managed to get in a few seconds of stretching here and there but Raya pretty much won today. At least she was happy when we were outside in the BEAUTIFUL weather.

I do have good news to report though. We saw the orthopedic specialist again today and got follow-up x-rays for Raya's broken arm. It is healing very well and had lots of good bone growth where the fracture was. The even better news is that there are no signs of a bone density problem and nothing in the radiologist's reports about decalcification or anything like that, so the fact that she has broken 3 bones in the last 2 months is just bad luck.

The other good news is that her weight check showed good progress since increasing her calorie intake, even with puking a couple times this week and not being able to tolerate her full feed volume a couple of days. I have a feeling that going back to 100% formula instead of subtracting oral intake calories this week has boosted her weight too. I don't remember exactly what it was so I'll have to add that later.

And last but certainly not least, Raya's fun new thing this week is that she started pouring water in the end of her extension tube and then trying to drink it out of the tube. Gross.

And yes, my 2 year old prefers to drink out of a ketchup squeeze bottle and doesn't listen when I tell her to get off the table. Fingers crossed that everything will return to its previous levels once the sinus infection has cleared!