Musings of a Marfan Mom

The Menininho’s Sleep Study

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Saturday night the Menininho and I checked into the hospital for his sleep study. Earlier in the day he’d begun to get a little apprehensive about it but luckily was back to being excited by the time we arrived. “I going go my SEEP SUDY!” he told the tech happily.

(Side note: our tech was awesome! He was friendly and great with M.)

We had some time to get acclimated to the room and to get M changed for bed. The tech asked M about his favorite colors and promised him a surprise in the morning. All M wanted to talk about was the “sticker mustache” he was going to get, haha. He’s come so far from when he was terrified of mustaches and his school teachers all took turns wearing them and putting them on dolls around the room to break him of the fear.

I was shocked at how well the Menininho handled the set up for the study, to be honest. Sensory issues are his biggest challenge and no social story in the world can really prepare a kid for the feeling of sensors glued all over his face. He was a ROCKSTAR though! I was SO proud, and the tech kept telling M how proud he was of him, too. He even handled the deviations from the social story well: his tech was a male instead of a female (we were told we’d have a female at our originally scheduled study & it didn’t occur to me to ask when we rescheduled) and M wasn’t given a doll to put stickers on like J had been.

My only complaint was that the process was only child-centered to a point. I told the child life specialist who called a couple of weeks ago that M would not want an adult-sized bed. He really wants a crib in new situations. She kept repeating “well, we really prefer for children at this age to sleep in the adult bed so their parent can lay down with them.” She finally said that they’d leave a crib in the hall if he got to the hospital and wouldn’t sleep in the large bed.

M immediately told the tech and me that he didn’t want a big bed. He brought it up a few times and the tech kept saying they wanted me to sleep in the big bed with M because “kids this age tend to pull their sensors off.” I knew he wasn’t going to pull anything off, but then M ended up agreeing to be in the bed so I didn’t push for the crib at that point. However, once he was hooked up, the tech wouldn’t leave till I was laying down next to M. The bed was not really big enough for two people. Then M wanted me to sleep with him which about blew me over as the only time he has ever wanted to sleep in our bed was once when he was sick. I figure he was really scared of the big bed and having me in there would be the only way he’d fall asleep. As the night wore on and I was having hip pain I really regretted not insisting on the crib! I guess with both the child life specialist and tech pressing, I worried that M would pull his sensors off and we wouldn’t be able to complete the study. I should have just trusted myself though!

Anyway, M had his best night’s sleep ever. The only time he woke up was when a tech would come in to unwind some of the wires from around his head or arms and even then it wasn’t a full waking. No head banging or anything. I think this is because we were co-sleeping. So, that’s my other regret about not insisting on the crib…I don’t know how valid this study was. Guess we will find that out at the follow-up appointment this week!

The only challenge in the morning was dealing with the glue in M’s hair. He does NOT handle bathing well. I tried to wash it out just using a washcloth but it didn’t work, so he went home with glue hair. Oh well. Two additional washes later we got it all out!

Here’s a pic of M reading to calm himself while the sensors were being glued on. I’ll have a bunch of pictures here on Wednesday, which will be available for anyone to use to prepare their child for a sleep study.
Toddler at a sleep study

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