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Sunday, April 7, 2013

OT, track meeting, splash, splash-sicles, and sick again

At therapy on Friday, I thought we were headed for a marvelous weekend. Raya had the BEST session she's had at OT since probably mid-December. She was FINALLY over the last of her congestion from the ear infection/sinus infection/allergy combo that hit her early in March. She was in a great mood and was SO excited to go to "feh-a-py" and play.

Back in December sometime (before the sickness stuff hit & before the huge setback with reflux and dietary changes) we were working on getting rid of some of the primitive reflexes that Raya still has intact that should have gone away by now. The one we had been working on is called the asymmetric tonic neck reflex (ATNR) and is a reflex that is supposed to go away between 6-12 months. It affects the ability to do cross-body work, which for a school-age child can include reading (since the eyes move back and forth across midline), writing, and really anything that requires the hands to cross the body's midline. It's really interesting stuff and I'll probably write more about it another time. Anyway, one of the things that helps with integrating the ATNR is doing things in circular motion. Raya LOVES being in motion, and one of her favorite ATNR activities is when Ms. M spins her around on the big scooterboard. She LOVES it and giggles the whole time, unless she's not feeling good or is having a bad day. Friday was a good day though.
She actually had a really good session on Thursday too. Her OT is going to be gone for the next 3 Fridays so when she had a cancellation on Thursday, she called me and had us come in so we could make up one of the days we'll miss. Raya was in heaven having OT 2 days in a row. :) Me, not so much. It really messes with my head having therapy on the "wrong" days. :)

Friday night was fun too. The big kids had their school district's track meet, or "track meeting" as the little girls kept calling it. :) We hadn't found out about it until 3 days before, so I didn't have time to prep them or practice until the day of (SOOOO much homework this week!) but they had a good time. The little girls did too. Raya wasn't happy that she was strapped in the stroller for a lot of it but once we let her out, she was thrilled and had so much fun playing on the football field and running around on the track.
It hurts my knees to look at that picture. She was pretty darn cute running around with her backpack on. :)

When we got home, she was WIRED. We were out late and the pharmacy (and/or the neuro's office) had screwed up and not ordered/refilled her "nigh-night" medicine in time, so we didn't give it to her that night. We've been rationing it this weekend (meaning she didn't get it 2 nights in a row) because we NEEDED her to sleep tonight since we have to leave early to head to the hospital for an appointment tomorrow morning. Her nose had started to run, as had Cole's, and I remembered that out of my 4 kids, those are the two that have tested mildly positive for grass allergies. I doctored them up for that and sent them to bed. 

Raya was up until about 11:30 and finally passed out halfway on the couch with books all around her.
It was a pretty miserable night even after she went to sleep. All night long, she kept waking up not feeling good. I think some of it was because of the grass, but I also KNOW that some of it was reflux. One time, she even arched her back, kicked her legs out, & cried like a really young baby will do with reflux. She had little crying episodes all night long. Some of them were gross snot-sucking, followed by coughing from the snot-sucking and some of them were reflux and nothing I did (or tried to do) would make her stop crying. Eventually she'd just lay down and go to sleep again. Neither one of us got much sleep that night.

Yesterday, she woke up with nasal congestion and the kind of cough that comes from drainage running down her throat. I know some of it is because of the allergy flare from playing in the grass, but I think the Neocate Splash is another factor in the cough. She started drinking it a few days ago and she likes it. Here's what it looks like:
Of course this picture is totally misleading. They are "juice" boxes, but the liquid inside them is not color coordinated with the color of the box. It looks like formula. We won't talk about what it tastes like but I want to gag every time I catch a whiff of her breath after she's been drinking it. (sorry but it's the truth.)

Anyway, she really likes it so far, which I'm thrilled with, and she does great with drinking it out of the straw, which I'm also thrilled with. The bummer is how often she chokes on it. She has passed her last 2 swallow studies on all consistencies of liquids, but in the past week, I've been a little concerned and I've started to wonder if the cough & her losing her voice has anything to do with inhaling Splash so many times this week. Either way, she's sick again, and it really REALLY stinks. Last night was another long and not too fun night because she was coughing so much and seemed a tiny bit warm. She slept propped up with blankets & pillows on the floor, and that helped a lot with her comfort level while she slept. (I think.) It has me wondering if we need to get her one of those reflux wedge pillow things.
 
On the bright side, for the last 2 afternoons in a row, she's laid on the couch and snuggled with me for a nap. It totally makes the lack of sleep at night. Snuggles with this girl have been so few & far between that I take full advantage whenever I get them.

Also on the bright side, we've found another way to use what she's allowed to eat/drink. For the brief moment that she was healthy again, she reverted back to her extreme love of ice and cold things. She decided today that she wanted a popsicle, so I let her pick which flavor of Splash she wanted to make her popsicles out of and poured it in a popsicle mold. A few hours later, she had herself a tropical flavored Splashsicle. It was a HUGE hit!
I gave her the one that wasn't full first just to see if she liked it but then she ended up eating a whole one for dinner. I hope this is something she'll stay with for a while because then she and the big kids can eat popsicles together this summer.
(doesn't everybody have boxes of Farrell bags & formula stacked against the wall by their kitchen table??)

Tomorrow we'll be heading up to the hospital first thing in the morning for our annual visit to the geneticst. I don't expect anything at all to come from it, other than for him to tell me she looks great and that we still don't know if her genetic duplication means anything because the parent testing never got done, but it takes 4 months to get in with him so we're going anyway. We'll be able to talk to him about the things her neuro is testing her for too and maybe he'll have ideas about that.



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