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Tuesday, June 4, 2013


My little missy has developed some not great sleep habits that, when combined with her old not great sleep habits, are rather exhausting for me. And yes, they're probably mostly my fault. Sometimes you just do what you gotta do to get by. I'd be lying if I said that I didn't like the fact that she now wants to snuggle with me on the couch every night instead of going to bed. After such a long time with her resisting my every attempt to snuggle with her, I love every second of it. Even so, I know it's not the best thing for either of us in the long run. Sleep is a hard thing to get back on track once it's off.

One of the bad habits we've gotten into is letting her fall asleep in the living room instead of putting her to bed before she goes to sleep. Sometimes we can get her in her own bed after she's asleep and other times, she wakes up and throws a fit when she realizes I'm trying to get out of snuggling with her. Last night, I tried to put her in her bed and she woke up and got really mad. Eventually she said she was mad because she wanted the lights off. Then when Donny turned off the lights, she threw a huge fit again because it turned out that she wanted to turn off the lights. She got up and turned on the lights so she could turn them back off, but she also turned off the ceiling fan. When she wad finally almost back to sleep on the floor, Donny tried to turn the fan back on. Unfortunately we guessed wrong about which switch went to the light and which one went to the fan and he flipped the light back on & off. She felt personally insulted and the wailing started all over again. The funny thing lately is that some nights, she climbs in bed with us. The reason that's funny is because she is the one kid out of our four that I never expected to do that, and because she's the ONLY one that never, ever slept in our bed as a baby, not even once. The others rarely ever slept in our bed but Raya was never welcome there because of all the vomit. It made me feel bad that I didn't ever snuggle her in our bed when she was little but holy smokes, there was SO STINKIN' MUCH PUKE! Well, we're making up for lost time now, I guess. Bless her little heart, she gets so angry when she wakes up at night so I try to find a balance between giving her what she wants so she'll be quiet and not wake everybody up and not giving in to her demands. The result of that has been the many nights she's spent recently on the floor next to my side of the bed or else in it for a little while and then she falls out and keeps sleeping. It beats the heck out of the couch. It's not the most comfortable couch for sleeping on all night long.

Last night, she was supposed to be in bed and I was working on homework when the little stinker appeared behind me, demanding that I snuggle her. The argument she gave was a compelling one. ”Mommy, I have a cut on my finger and it hurts when I'm in my bed but it doesn't hurt when you snuggle me.” Well then, little lady, go get your blankets and we'll snuggle while I do my homework. :)
It's all fun and games until Mommy gets tired of typing because it's really hard when there are legs on top of your mouse hand and that's a really awkward angle to type at. As it turns out, this is a much more comfortable way to type when there's a 3 year old sleeping on your desk:

So that's how we snuggled. It was a win-win. At the point where I ran out of things I could do with her laying there, I had Donny take her to her bed. Whenever I do it, she wakes up, but she didn't wake up for him. It was actually a really good night for her. She stirred a little bit when I went in to put Pedialyte in her pump and give her the night doses of her meds but she stayed asleep. Donny must have turned off the pump when it beeped because I didn't hear a thing. She disconnected herself from the pump this morning and it was the first night in probably 2 months that she stayed in her bed the whole night and didn't wake up having a fit about one thing or another. Hopefully it's a trend that will continue!

I expect her to sleep well tonight unless her new food prevents that from happening. Corn has gone as well as expected. It still has a tendency to linger in her stomach, no matter what form it's in, but she's not miserable from it and it has made her really happy to have food to eat again. The hard part has been regulating how much she eats, and the fact that she no longer has much, if any, interest in drinking Splash or eating her Neocate pudding, so her overall oral calorie intake has gone down since she started eating. Ironic, isn't it? Anyway, since she's doing as well as we hoped with the corn so far, we decided it was time to add another food with a higher water content. Raya has been asking for a couple of months when Dr. S was going to let her eat grapes, so that's what we picked.
And she's pleased as punch to be eating them! She's obviously been deprived for a long time because I ate some too and they're not very good grapes. She did pretty well with eating them. She forgets how much food she's supposed to put in her mouth at once and she still likes to let it sit in her mouth for a little while sometimes, but she was really happy to be eating grapes. And now we keep our fingers crossed (and pray) that the grapes move on through. There's really only one way I'll be able to tell if they do or not, and that would be vomit. Chewed up grapes still aren't small enough to fit through the G tube so I won't be able to drain her stomach & see what's still there like I can with the corn. We'll just have to wait and see how she feels.

In other news, she has helped me to confirm that she is still allergic to wheat. She's been caught more than once lately on top of the kitchen counter with her hand shoved deep into the box of Special K Fruit & Yogurt and her cheeks bulging with cereal. Sure enough, a couple of days later, she gets a tiny, dotty rash around her mouth and a more visible dotty rash pretty much everywhere that her diaper covers. (and no, she's not allergic to the diapers)

1 comment:

  1. We are having sleep struggles too. In March, we had our yearly Dev Clinic appt, and asked about sleeping. That's when the Melatonin stuff came up. Then she got sick over Easter and it's been one thing or another since (URI, GI, Ear). Getting her to sleep is sometimes a fight. Putting her down once she is asleep can be impossible (understandable with an ear infection). Then she wakes up and wrestles for 2 hrs. She was able to put herself to sleep in the past, but that stopped last spring when we had whatever the hell that all was (migraines, bacterial overgrowth, whatever). I know people say "it's ok to rock them, they won't do this when they are in college!", but of course for H, that may not be true. And I can't do this with an adult, I can barely do it with a 3 yr old.

    So two nights ago (she is currently healthy and not in pain), we put on our big girl panties and I tucked her in and sat by her and sang (all my normal stuff). She played in bed, sooo cute, and it was all fun and ok until an hour later when she was TIRED and not asleep. So I gave in, I thought an hour of trying was good progress. Last night, we tried again. She was on to me, and 30 seconds in she gave me THE LIP. I can't do sad, I just can't make her sad, she has too much else making her sad. So I picked her right up and snuggled.

    Then it hit me - I LOVE snuggling her to sleep. Love that time with her. It's when she's not feeling well that it's a struggle and it sucks. Well all the "sleep training" in the world isn't going to fix that. So now I'm just depriving myself of the snuggle time that is good for both of us. So screw that, I've already thrown in the towel. I am going to focus on making damn sure she's healthy and comfortable, knowing that when she is not, THAT is when it sucks.

    No idea if all this makes sense, other than to say I hear ya cluckin, big chicken!


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