Sleep Study #3

I should be working right now, but the internet at the hospital isn’t working. Go figure. I was counting on getting several hours of work done, instead I’m going to go to sleep at 9:30pm, and wake up when the test is over at 4am. FOUR IN THE MORNING?! Le sigh.

The doctors told us last week, that Ellie would need another formal sleep study. She’s been staying at the hospital for the past two weeks, for nights only, and has been completely off bipap. Tonight’s study will confirm (hopefully) that everything is good, and we will go home with orders not to hook her up to her monitors unless she is sick, or we have good reason to hook her up. Crazy.

They didn’t tell me that I would have to stay, until yesterday, and I’m not too thrilled about it, but I’m glad I came. Ellie has never been so upset, as when they were hooking up all the leads and probes tonight. Poor girl cried herself to sleep.

We had a PT appointment today, where they gave Ellie a pair of Hip Helpers (see link), to keep her legs from splaying apart. We also got a contraption called Walking Wings (see link), which is much like a harness, only padded, and has handles so I can support her in the walking position, without killing my back. She loves both items, although isn’t too crazy about how much she needs to use her abs while sitting. It’s really good to build core strength, so I think she’ll be in those huggers a lot over the coming weeks.

She was quick to learn the proper method for pulling up to stand. Before, she would try to rely on arm strength alone. Now, she brings herself to kneeling, and then stands. It’s much more effective, and she’s happy to stand, stand, and stand.

Tonight, as we were waiting for the breathing technician to come to the room we’re in, Ellie scooted to the side rail of the crib, pulled herself up to standing, and cruised around her baby jail. 

We were adamant that we were going to skip setting the crib up for her again, and just transition her to the twin bed in her room, but I’m having major second thoughts. The twin bed is high off the ground, and she is now mobile. She can get to sitting, and from sitting she can go anywhere! It will be a royal pain to set the crib up again, and in the time where we’re showing our house, I’d be happy to keep her in the Pack n Play until she outgrows it. I think we’ll have to think about it when we set up a new room for her (if we ever sell our house!)

I cannot believe how much she’s changed recently. She gained weigh REALLY quickly (1kg in under two weeks), but the added weight has spurred huge progress in her motor skills. You would not believe how fast she is at scooting, especially when we play “I’m going to get you”! Oh, she’s such a funny little girl, and so with it.

Our PT said today, that he’s amazed at how quickly she learns, and how evident it is that she takes everything in and truly understands what is going on. He said it’s likely this will continue, and that hopefully she won’t be affected by some of the worse symptoms on the PWS spectrum, like autism and behavioural issues. He worked with a boy in England, who had PWS and was autistic, and by Ellie’s age, the sypmtoms were already present. I can only hope that we will be spared that aspect of the disorder.

I read something very interesting, on one of my support forums, the other day. With regards to play food, food tv, and cooking with kids with PWS, there’s a theory that access to play food, and media about food, and being around food, actually reduces the anxiety kids with PWS feel around food. Dr. Miller, the leading PWS endocrinologist, was the one who suggested the idea.

If you start baking, or cooking with them from an early age, and implement rules (like no eating raw batter, and giving the baked goods away after) early on, that they can actually grow up to have a healthy relationship around food, and feel less stress.

I could possibly bake with my Ellie. You have no idea what hope that gives me.

I’ve been looking online at fun felt foods I could start making over the next couple years, and at play kitchens I could build. Before, I thought it was impossible to have any of that, and the thought made me so sad. All we can do is try! If we start with basic rules, right from the time she can grasp them, it might just work!

I am still so tired from our big walk, and busy catching up on laundry and cleaning. Jakob and I made a Thanksgiving wreath for our front door, and started on one for Halloween. Yarn wrapped wreaths are so easy to make! Thank you, Pinterest!

Time to sleep, 4am will come quickly.