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Tuesday, February 26, 2013

Oh, what a frustrating morning...

Most days, {aside from the whole feeding her "medical food" with a machine through a piece of silicone implanted in her belly thing}, I feel like Raya is a pretty normal kid. Then we have mornings like this one and I feel like I've been slapped in the face with reality again. I think my sister described it best when she said that Raya is wired differently. In so many ways, she's just a 3 year old, but then there are the other things that remind me that parts of her body & mind don't function the way that "just a 3 year old" should function.

Last night, she was feeling crappy thanks to the cold she has caught. She looked pretty pathetic and felt like snuggling on the couch, so we did.
See what I mean? Pathetic. Poor girl didn't feel good. No fever, no cough, no runny nose, just a stuffy head and her cheeks were bright red for no real reason. So we snuggled on the couch because she was comfortable, and it was a good snuggle for both of us.

This morning was an entirely different story. It started with Raya waking up in a cold, soaking wet bed with cold, soaking wet clothes. I had changed her diaper at midnight and her last feed had ended well before that, but she must have been holding it in because she peed everywhere. That meant she needed a shower before school. Getting her in the shower is a piece of cake but getting her out is iffy. Actually, "iffy" isn't a strong enough word. More like tiptoeing through a minefield. We use many different techniques to help her transition from being in the bath to getting out of the bath without freaking out, but she doesn't do well with being rushed and sometimes there just isn't time to play games with her. This morning was one of those times. I was more than patient but eventually had to just pull her out of the tub kicking and screaming so she wouldn't be late for school.

From there, I laid her down on the living room floor where I had her clothes, diaper, and basket of remedies for the horrendous diaper rash we're fighting off. She was crying and mumbling something about "two more minutes" (meaning that she wanted to be in the bath for 2 more minutes before I got her ready for school, never mind that she'd already been in for at least 15...). She fought me on everything. I got her diaper on, but she was fighting me on it so I couldn't put the medicine on her that I needed to. Then I started trying to put her pants on. She kicked and fought, so I tried the shirt. As fast as I could get one arm in a sleeve, she was pulling it out. (at which point I wondered why I had chosen a long sleeved shirt...) It took a lot of pulling & tugging, but I got the shirt on. Then she pulled it off and was crying and saying that she wanted a different shirt, which nobody could find. Not that it mattered what shirt I had been trying to put on her, the response would have been the same no matter what because she wanted to be in the bath and not having clothes put on her.

By then, it was time to be getting in the car. I knew there was no way we'd make it to Raya's class on time so I let the big kids ride the bus and tried to get Raya calmed down and dressed. (they're at the same school but start 20 minutes after the preschool kids) By this time, she was spinning around in circles, wearing nothing but a diaper, and still crying about wanting 2 more minutes in the bath. School starts for her at 7:45, and since we hadn't left by 7:45 and she was still unclothed and crying, I decided she was not up to going to school today. I asked her if she needed to stay home today and she nodded her head yes. I put her blanket around her and she sat down on my lap. She curled up on my lap and sniffled while I called the attendance hotline to report her absent. Eventually she let me help her put clothes on (the shirt I had been trying to put on her before and a pair of pajama pants) and she finally relaxed.

A few minutes later, I sat down to check my email and there was a message from Raya's support coordinator from the state. (quick refresher, we got a new one because she turned 3, and the old one had failed to mention that I needed to get prescriptions for Raya's therapies so the new one asked me to call the ped's office and get scripts for OT and FT and have them back dated for 11-17-12.) The email said that I needed to call and get a new one for feeding therapy because the script said "speech & feeding therapy" apparently it can't have the word "feeding" on it. She had told me in a phone conversation that I needed to get a script for OT and for "speech" (which they use for feeding) but she didn't say that it COULDN'T say "feeding" on it, and when I called the doctor's office I thought I was covering my bases better by having them say both. Even after discussing it with the support coordinator, I still think it's a load of crap don't see why having it say "speech & feeding" instead of just "speech" completely invalidates the script but sure, I'll make a few more phone calls with all my spare time.

In the mean time, Raya's state of mind had shifted from disorder/irrationality to being mad at me for not taking her to school. Seriously, kid?? While I was on the phone with the support coordinator, she was hanging on my leg and whining, "I thought you were duss' taking me to SCHOOL!" Um, honey, remember the part where you were pulling your arms out of your sleeves faster than I could pull them in?? She wanted pudding and a drink of water, so I pulled the pudding out of the fridge and gave her a cup with ice water in it, just like she likes. Only she didn't like it. She threw a fit because the pudding and water were cold and she wanted them warm. She NEVER wants anything warm. I warmed up her pudding and dumped out the ice water & refilled the cup with lukewarm tap water. She thanked me and said she liked it warm. REALLY?? That's news to me. Complete opposite from how she normally is.

THIS, my friends, is why I hate it when Raya gets a cold. I'm not sure I'd even call what she has right now a cold. Her head is stuffy but it doesn't seem to be going anywhere. She doesn't have a runny nose and doesn't have a cough from post-nasal drip. Whatever it is though, it has done a number on her today {and subsequently, on me} and has made it feel like we just lost a year of OT. The timing is really sucky too since she's still trying to adjust to having her formula changed a month ago. The combo of her GI issues still being a problem and catching a funky head cold is not good.

Speaking of the GI issues, I sent off another email to her GI doctor because I feel like we're stuck right now. Still refluxing many, many times a day, still complaining every day that her throat hurts, still talking about having puke in her throat or mouth, and now she's having very liquidy stools because of the Neocate. The only things that have improved since she went on Neocate are the keratosis (chicken skin) on her arms & legs and she seems more comfortable than she was before switching. She's not waking up late at night with a stomach full of food & formula anymore but that's because she's not eating any food and her formula is moving through her very well. So like I said, I feel like we're totally stagnant right now. Hopefully she'll have some suggestions.

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