Musings of a Marfan Mom

June 18, 2012
by marfmom
1 Comment

The Menininho’s Sleep Study

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

June 15, 2012
by marfmom
0 comments

Friday Favorites

It’s Friday, so you know what that means!

Come on over and link up the favorite post that you wrote this week. I promise I’ll come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too. I’ll leave the linky up through Sunday night.



June 14, 2012
by marfmom
6 Comments

Sleep Study Social Story

M has a sleep study coming up this Saturday. It was supposed to be last week, but we had an emergency and had to reschedule. Sleep disturbances are VERY common with autism but an autism specialist pediatrician here suggested he have a sleep study to rule out any comorbid conditions like obstructive sleep apnea or night time seizures. The Menininho takes 2.5 mg of melatonin in order to fall asleep at night (otherwise it can take hours), but still wakes every few hours during the night. Luckily, he doesn’t get out of bed or (usually) wake us up.

We’re kind of sleep study pros in this house (and I still need to update here about mine!). Having been through 5 now between J and myself, I had a pretty good idea about potential sensory issues for the Menininho. So, I created a social story for him about what to expect. Feel free to use/adapt this for your own purposes.

My doctor wants to see how I sleep at night, so Mommy and I are going to spend the night at the hospital.

We will go after dinner and pack a backpack with my PJs, toothbrush, pillow, stuffed animals, books, and a snack.

Mommy and I will sleep in the same room. I will have a big boy bed with rails so I feel safe. There will be a TV in the room, a bathroom, and a table.

First I will get dressed for bed and brush my teeth. Then a nurse will come in to help me. She will give me a doll. As the nurse gets me ready for the sleep study, I can get the doll ready. Before the nurse does anything to me, I can try it out on the doll.

The nurse will put some stickers on my legs and chest. I will also get a little red light wrapped around my toe. Then, I will get some stickers near my eyes and chin. I’ll get a little sticker mustache too! The nurse will put a little microphone near my neck. I’ll also get two stretchy bands around my chest.

Then, it will be time for my hair jewelry! The nurse will use a crayon to make marks on my head.Then, she’ll use a q-tip to put some special glue on my head. On top of the glue will go a little gold circle. I will get 8 gold circles on my head. Finally, the nurse will put a stretchy cap over my head to protect the hair jewelry.

There will be many wires, but the nurse will tie them away from me.

The nurse will leave and Mommy will read me some stories and sing me songs, just like at home. Then it will be time for bed!

If I need anything during the night, Mommy will be right there. In the morning the nurse will take my stickers off, Mommy will clean my hair in the bathroom, and then we’ll get some breakfast. The end!

Hopefully this helps the test go more smoothly. The Menininho seems pretty excited about it, too!

baby sleep study

Baby J at one of his sleep studies