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Getting back to normal

I had forgotten how much a hospital stay throws everything off, even if it's only a one night hospital stay. I had planned on coming home Wednesday and hitting the textbooks but that didn't happen. Since it took us an extra 3 hours to even get the test started on Tuesday, we were home 3 hours later than I thought we'd be on Wednesday so I had to cancel respite for the afternoon. Raya needed attention, the other kids needed attention, I was tired from not sleeping very much, and I didn't accomplish ANYTHING that day. Raya was full of extra spunk & attitude that night. She's usually pretty okay about going to sleep, or she falls asleep easily because of her medicine that helps her relax, but somehow she fought it Wednesday night and was up until after 9:30.
She couldn't decide whether to fold her arms or put her hands on her hips so she did both. :)

We have eaten take-out pretty much every day this week (including no less than 2 In & Out trips) because I've been trying to catch up on things and haven't felt like cooking, can't decide what to cook, and just haven't bothered. Hopefully I can get myself back on track this week. I also didn't get nearly enough study time in. Thank goodness it's the first week after midterms and not the week OF midterms and I have time to finish learning everything I didn't get enough of this week.

Thursday morning, I wasn't sure if she would make it to school because she had stayed up late and did not sleep well the night before. I would have let her stay home if she had wanted to, but she said she wanted to go play with her friend Selina, so I got her ready & got her there on time and happy. Thursday afternoon was busy and crazy and loud around here with the kids, so I left for a while when Donny got home because I needed some alone time. When I got back, Raya was sleeping in the girls' room. Ashtyn is such a good big sister and had folded a big quilt into a wedge-shaped pillow for Raya to sleep propped up on. After I got home, I started working on homework and Kaida (who I SWEAR was a ninja in a former life) silently appeared in my office to tell me that Raya was crying. I went to see her and she was squirming around on the floor fussing. I put my hands on her back and started talking softly to her and she stuck her elbows out and tried to get away from me. After a little bit, she was awake enough to realize it was me and she let me pick her up. I snuggled her on the couch for most of the night but she inevitably ends up on the floor. :)

Friday was the first time in about a month that we've seen her OT and FT back-to-back like we usually do because her OT was on vacation. We were SO happy to be back at OT! Raya was really grumpy that morning because she thought that I was making her stay home from school. She didn't realize that it was Friday & she doesn't have school because missing Tuesday & Wednesday threw her off. I told her we were going to go see her OT and for the next couple of hours, every time she got frustrated about something, she would yell, "I WANT TO GO TO THERAPY!" Sad but funny. I'm glad she recognizes that therapy makes her feel good. Or maybe she doesn't and she just knows therapy is fun. Either way, she was happy to go. She was very, very fidgety and wound up through the whole session. She didn't follow directions as well as she usually does for her therapist and was kind of being a pill, but at least she was a happy little pill. :) Here she is towards the end of the session making "carpet angels".

She and I spent Friday night on the couch too. She's having a hard time getting past her traumatic experience at the hospital this week and has not slept well. She did better Friday night and seems to prefer being on the couch or the floor over being in her bed.

Yesterday I was able to attend a conference about therapy services for kids with delays or disabilities. I left the conference feeling very frustrated for families in this state whose children are under the age of 3 because of the recent changes to the state's early intervention program. When Raya was a baby and we started out with early intervention, we had a PT and feeding therapist come to our house weekly. We were able to add OT when she was diagnosed with cerebral palsy and her therapy services were moved from the early intervention program to the department of developmental disabilities. As often as she needed to see each therapist, she was able to, whether it was weekly, every other week, once a month, etc. Now, the state has changed the program so that there is a team of therapists who evaluate the child, and then the area with the most significant delay determines which therapist becomes the team lead for that child. That is the only therapist that comes to the house weekly. The team lead can consult with the other therapists as needed, but the child does not get the benefit of working with each therapist weekly. To put it simply, I think it's a load of crap. I don't care what flowery words the woman from the state EI program used to describe how wonderful the new "team model" is, this will be a great disservice to most of the children in early intervention. All I know is that Raya would be nowhere near where she's at today if we hadn't been able to have the 3-4 hours a week of therapy that she started getting from very early on. *stepping off soapbox*

So that's what I did all day yesterday. When I came home, I had to go through 2 lab exercises and then take a timed lab quiz, so that took about 3 hours. We fed the kids & sent them to bed and then we both started working on work projects in the office. Raya kept asking if she could lay on the couch and we told her to go to bed. A few minutes later, we heard shuffling sounds from the doorway and when I turned around, I couldn't help but crack up.
This is her way of subtly asking if she can watch Backyardigans on Netflix. She thought that if she couldn't see us, we couldn't see her and she wouldn't get sent back to bed. She really wanted me to come snuggle her, but I had things that I really needed to get done, so she sat on my desk while I worked. Then she plopped her blanket up on the desk and laid down.
I figured as long as she was comfortable, I'd keep working. She played with her hands for a few minutes, and her hands climbed on my face, up my arm, in my ear, etc. but she was happy so I kept working. A few minutes later, she fell asleep.
She stayed like that for about 40 minutes while I edited pictures. It wasn't bad except I couldn't really reach the keyboard. :) I put her in her bed and then Donny and I fell asleep on the couch watching a movie. He went to bed around 1:00 and I woke up at 4:15 because Raya was on the couch with me and was flopping all over the place. I got up to use the bathroom and as I was walking out the door, she freaked out. She was crying and trying to find me and when I picked her up, she clung to my neck and wouldn't let go. I was too tired to try to get her back in her own bed so I just put her in bed with us and she stayed there the rest of the night.


Today is kind of a sad day. It was our sweet, wonderful respite provider's last day with Raya. She graduated from college and will be starting a new job now, so we don't get to keep her anymore. She has been absolutely wonderful. She started working with Raya in October 2011, so she's been with us for 19 months. In that time, she's kept Raya out of my hair while I did all the things I couldn't get done with her around, changed a LOT of diapers (including poopy ones), taken her to therapy a few times, come to summer movies with us, taken her to the park, kept her home from church so she didn't catch all the nasty bugs that seem to work their way through the nursery frequently, put her G tube back in a couple of times when it came out while I was gone, given me a chance to spend alone time with Kaida, and given Raya & Kaida something to look forward to 3 times a week. Raya and Kaida adore her and I hope our new provider can start soon or there will be some very unhappy little girls around here when they realize they're stuck with boring Mommy all the time. :)


We are happy for her to start the next chapter of her life but we sure will miss her!

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