I love her dearly but she is wearing me out. She is non-stop on the go from the minute she wakes up in the morning and starts yelling, "Mommaaayyyyyy! I wah OUT!" until she finally goes to sleep at night and sometimes also in the middle of the night when she wakes up after her evening doses of meds and can't go back to sleep. Today has been a long day.
I was starting to feel optimistic about Raya being back on Periactin. (it's an antihistimine that's also used to stimulate appetite) She started back on it on Tuesday and hasn't had a real nap since then BUT she has started asking for food again and has been eating some of it. This morning, she REALLY wanted a Nutrigrain bar. (side note: for whatever reason, my kids call them "soft granola bars" so it took me forEVER to figure out that "nah-duhba" meant that she wanted a nutrigrain bar) I gave her half of it and she seemed really happy to have it and was doing a good job chewing it and then I turned around and it was all coming back out:
So I guess we haven't really moved past that spitting everything out phase yet. She knew I was taking her picture and she said, "No see me! It gross!" Today was day 4 of Periactin so she'll have the next 3 days off and start up again on Tuesday. We didn't have any really bad insomnia nights like we've had before with it but she hasn't had a good nap the whole 4 days. She seems conflicted like there's a part of her brain that's telling her she wants food but then there's another part of her brain telling her that she shouldn't eat it. We'll see what happens on the next round. It would be nice to get her oral calorie count back up to where it was before.
I put her in bed for a nap at the normal time and one of Kaida's little friends came over to play, which was SO nice! I knew there was very little chance of her actually going to sleep but I tried anyway. Another friend came over a bit later so I could do 6 week pictures of her little baby and when we were almost done, Raya had decided she was done hanging out in her crib so I got her out. I was trying to get the last few shots of the baby and Raya was totally fascinated with him. Every time I would be a half second away from clicking the shutter, her little head would pop up in the frame right in front of his face. Her curiosity was cute but she just wouldn't stay out of the way long enough for me to snap a picture! We finally had to tell her to go see if there were any airplanes and she jumped up and ran to the window to look. :)
Her PT session this afternoon started out really well. A little too well, actually. Remember how last time, Raya spent the ENTIRE appointment trying to get away from her PT? Well this time, she saw Jessica, dropped what she was doing, went over to her and started hugging her leg. Then she waited for Jessica to squat down and hug her back. Since she was being friendly, Jessica picked her up and Raya just laid her head on her shoulder while she did a little bit of stretching on her. We were both kind of in disbelief at that point because it was SO not like Raya.
Then I took a pencil away from her because she was drawing on the toy shelves with it and the meltdown commenced. It lasted for most of the afternoon. There were a few quiet moments during the PT session but for the most part, she was crying, whining, yelling, trying to get me to pick her up, trying to get onto the counter, trying to get onto the table, trying to get away from Jessica again, and so on. And sadly, we're running out of things to work on with PT so it may not be much longer before we don't need it anymore. We will miss our PT when Raya gets discharged! We have been SO blessed to have such great therapists working with Raya!
After Jessica left, Raya decided she needed some water in a cup and a spoon to play in it with. She was bound and determined to push one of the chairs across the kitchen to the silverware drawer so she could see into the drawer to get a spoon out. I kept taking the chairs and putting them back at the table but she would just scream and yell at me to let go. Then I sat on the chair she was trying to push and she started yelling, "Dih OFF Mommy!" She was an angry little thing, let me tell you. It just kept on going too. She would stop crying about one thing and then another tiny little thing would set her off again.
Right as we were about to walk out the door to get the kids from the bus stop, she was throwing her fits again and wouldn't hold still long enough for me to tape the extension tube to her stomach. I handed her the backpack and as she yelled, "No wannit! You hold it!" at me and handed it back to me, she stepped on the tubing and her G tube popped right out of her stomach followed by...stuff. Stomach goo. And a little "tummy burp" that sounded like a balloon deflating. I laid her down and grabbed the nearest thing to clean up with and told her to hold still while I went to find the syringe to put it back in with. Of course when I got back she was just laying there playing with the tube.
I have to say, I'm getting pretty quick at popping that tube back in when it comes out. I think this one was my record though, despite having to repeatedly push her hands out of the way. She has this fascination with touching the hole when the tube isn't there. And by the way, I've realized lately that it's a little sad that I've become so desensitized that it doesn't even phase me to have her tube come out and have to put it back in. Such is life, I guess. But what can I say, we were in a hurry and had to get to the bus stop. :) Honestly I was just grateful that it was right BEFORE a feed and not right AFTER like some of the other times it's come out.
She finally fell asleep right when we pulled up to the bus stop so I rolled all the windows down (it was in the high 70s today) and let her stay in the car and sleep for a few minutes while the kids played. She woke up when we got home and went back and forth between being happy & crabby. It's hard to even find words to describe how she is but just being around her can be so exhausting sometimes. She throws tantrums like any ol' 2 year old but they just have this extra Raya flair to them that is probably amplified by the lack of OT (which hopefully we'll be starting again next week). She's also been doing that funny thing where her left cheek turns bright red.
It's kind of hard to tell in the picture but the right cheek wasn't red at all and the left one was bright red all over. I keep thinking maybe it's just dry skin so I put lotion on it but it doesn't seem to do anything for her and I hope it's not a sign of strange things to come.
This evening we went to a wedding reception for one of Donny's cousins and Raya nibbled on a couple crackers and a little bit of a roll. She also suckered somebody into giving her a cup of ice. For the rest of the time we were there, she played with the ice. She held it in her hands until it melted, put it in her mouth and chewed it a little, and thought it was really funny to spit it back into the cup. By the time we left, her fingers were bright red and freezing cold and she didn't even seem to feel it. *sigh* It was a good day but also a long & tiring day and I'm so glad it's the weekend because I'm ready to just stay home and do nothing for a day or two.
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