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Who needs sleep when you can party with Gram E?

My celebration over the magic that is the ocean sounds cd may have been a tad premature. It turns out that Raya can still resist the deep relaxation of the crashing waves and seagulls if she really wants to. She's good like that.

The past 3 days, she hasn't been letting me do her sensory protocol like she had been before. (sensory protocol= lotion massage on arms & legs, joint compressions in arms & legs, and rocking) Why, you ask? Because she doesn't want to let me be in control of the lotion bottle. Even if I put it behind me so she can't see it, she pops up every 30 seconds to demand that I put more lotion in her hand. One time I tried to just not use lotion and she threw a giant fit (you know, because it was nap time and she was TIRED) so I need to figure out a way to keep her from knowing that I'm using lotion or something. She also gets tired of me touching her by about the time we get through her legs and one arm and then wants nothing more than to get away from me. We'll keep plugging away at it anyway though. She does still like the cd of ocean sounds but the schedule of some of her therapies means that she just doesn't take naps at all on certain days so that's made it harder to get her to take naps on the days she isn't at therapy during that time.

She's had a little harder time staying asleep the last few days. It seems like there's been something going on with her body GI-wise but unless a kid is puking, it's hard to guess what's wrong with them. On Wednesday night, I put her in bed at 6:30 like usual and she woke up screaming at 8:00 but eventually went back to bed. Thursday night she woke up screaming at 11:00 and wasn't about to let me put her back in bed so we laid down on the couch and watched Frasier on Netflix. (I'm tired of Cake Boss and she likes the dog on Frasier. :) I tried to vent her G tube to see if she had excess gas in her stomach that was causing pain but nothing came out. The next thing I knew, it was 2:00 in the morning and Raya was bouncing around the living room just as happy as could be but with a horrible smelling poopy diaper. I changed her and put her back to bed and she woke up just before 7 ready to start the day. She never took a nap that day either. She woke up screaming at 10:30 on Friday night and I ended up laying down with her in my bed (which is rare, she usually refuses). There were a couple times when I honestly expected her to puke because of the sounds she was making. She sounded like she was having a lot of reflux but that also could have just been a result of her crying and being so upset. We both fell asleep & Donny put her back in bed but she woke up screaming at 4:15 yesterday morning and refused to go back to bed. I took her out on the couch and she went back to sleep until about 7:30.

I don't know what keeps waking her up but hopefully whatever it is will work itself out soon. I've noticed that her cheeks are turning red a lot lately too. There's never any rhyme or reason to it, especially when it's only one cheek turning red. I finally got a good picture but I don't have it on the computer yet.

On a more exciting note, my mom has been here visiting this weekend. The kids LOVE having her here because they only get to see her once or twice a year.
For a few days, they'll climb all over somebody other than me. :) Raya has been mimicking everything she does. They had quite the little game of monkey see monkey do this afternoon:
 She really likes Gram E. :) We went bowling yesterday for Ashtyn's 9th birthday and Gram E let Raya bowl with her. On Friday when Raya's PT was here, they were working on kicking a ball so when Gram E would put the bowling ball down so they could roll it down the lane, Raya would try to kick it. By the time we got to the 9th frame, Raya was ready to be done and wouldn't stop clinging to my leg so I bowled my last 2 frames holding Raya in one arm and bowling with the other hand. Sadly, those were 2 of my best frames. I even bowled a strike while holding her. :)

Oh, and I found a really good use for those big syringes we have so many of:
I made A-shaped pancakes for Ashtyn's birthday breakfast and they turn out SO much better with the precision of injecting the batter into the pan. :)


  1. I LOVE the syringe idea!! I will definitely be trying that one soon!!

    As far as sleeping, my daughter misses naps some days too, but it never seems to make a difference with her nighttime sleep times. She goes to bed around 7:30 and is up by 6am screaming her head off!!

    People keep encouraging me to try dropping her naps completely or let her stay up later. NO THANKS!! I need the nap time in the afternoon whenever possible to try to regain some sanity before my other kids get home from school and the late-afternoon crazies sets in! I won't keep her up later at night because that would be enough of a reason for her almost 7 year old brother to think he can stay up later, but I still have to wake him up for school in the mornings so he obviously needs that sleep.

    I suppose there are some mysteries about our kiddo's that are still unknown. All my husband and I keep saying to each other as she is screaming is, "good think she is cute!"


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