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Sunday, June 9, 2013

the good, the weird, and the crappy

The good:
1. Raya slept in her own bed all night long on Thursday night. Or was it Friday... Whatever. It was awesome.
2. She's been in a great mood all weekend with very few fits thrown and no big meltdowns. Also awesome.
3. She talks nonstop all day long. Although it makes my head spin sometimes and makes it difficult to form a coherent sentence when I'm writing an essay or to hear myself think, I love that she can talk. I love hearing her imagination expressed in words and to hear the off-the-wall stuff she comes up with. Most of all, I love heating her say, ”I love you Mommy.” Even though most of the time, the way she says it reminds me a lot of the orphans on Annie saying, ”We love you, Miss Hannigan.” :)
4. She's been drinking Splash again. Twice in the past 4 days, she's had a breakfast of Splash and tortilla chips that was enough calories to skip her morning tube feed. That makes her happy because she gets to stay unplugged for a couple extra hours.
5. Today, she told me she had a poopy diaper. She never seems to care so it was nice to have her acknowledge it.
6. She's smart. She's gone to her classes at church for 3 weeks now and she's already able to sing her version of a couple of the songs they sing. I love hearing her sing!
7. She likes grapes. She's not very good at eating them, but she likes them. It took her about 15 minutes to eat one grape at feeding therapy on Friday and she ended up needing to spit out the skin because she couldn't get it to go down her throat and started to gag on it. But she likes them!
8. I have less than 2 weeks left of my current class and then I'll take a little break. YAY!


The weird:
1. Her sensory issues are morphing again. Now she wants to be covered up with a heavy blanket when she's trying to go to sleep. Normally she kicks off any and all blankets. She's become sensitive to light & complains/cries/whines when we're driving and there's light in her face or even when certain lights are on in the house. When we walk outside from indoors, she covers her eyes and ends up needing to be carried a lot because it's to bright. There are other sensory things that have shifted in the last 2 weeks too but I can't think of them right now. None of it is a problem, it's just funny to see how the things she can & can't tolerate change.
2. Her body doesn't seem to be adjusting very well to the recent heat. She sweats a LOT. She sweats when she's playing in the air conditioned house. She sweats when the rest of us are cold. She sweats when she's falling asleep. Her back gets sweaty from the backpack, even with ice packs up against her back, and she sweats along her hairline more often than not. We're doing extra fluids and watching her closely when we're out of the house. Hopefully her body will adjust because the heat is here to stay for the next 4 or 5 months.
3. Her energy level has been noticeably lower since she started eating food again. It started to decline a little when we started making changes to meds & added the calorie additive, but it's definitely been lower since she started eating. She lays around a lot, and that's not really her style.
She also tells me she's tired a lot. I'm sure some of that is because she wakes up in the middle of the night almost every night and sometimes is awake for an hour or so. She's getting plenty of calories and fluids so that's not the problem. She doesn't seem to be in pain but that's likely due to the med she's on for nerve pain in her gut, so thankfully it's doing its job. It makes me wonder what the med might be masking.
4. She's had some funky coloring to her skin lately. This afternoon, she reached her hand out to show me something and I noticed that both of her arms looked really splotchy and mottled. Not red or rashy looking, but her arms were a combo of large purple and pale red splotchy mottled spots. She got annoyed at me because I grabbed onto her arm and stared at it for a while. I expected her skin to be cool to the touch but it was warm and dry. I'm filing this one away with the slap cheek spots she gets every now and then and it will probably be added to her list of funny autonomic quirks when we see neuro again in July.

The crappy:
1. Her stomach is still slow. This is not new information, we're just continuing to see it on a daily basis. Not that I expected that to miraculously change, but it's frustrating to just be sitting around waiting on whatever it is that we're waiting on. Her oral intake plummets when she eats something and then it just sits in her stomach for hours. It doesn't seem to matter what time of day she eats either, her stomach is slow in the morning just like it is in the evening.
2. She wakes up in the middle of the night every single night. We've noticed that it's almost always 4 hours after she went to sleep. She's always had issues with waking up late at night. It used to be that she'd wake up to vomit every night at about 10:30 or 11. Now she just wakes up. Some of the time, she wakes up when I'm giving her the night doses of her meds or doing something with the pump, and it just happens to be close to that 4 hour mark so we're trying to do meds earlier.

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