Ty's Sleep Study Adventure

Yesterday, I got a call in the morning asking us if we wanted to go to Boston Children's Hospital that night for Ty's sleep study.   His ENT had ordered one because Ty has enlarged tonsils and adenoids, and some sleep habits (restless sleep, snoring, strange sleep positions) that might signal sleep apnea.  Apnea is very prevalent in people with Down syndrome for several reasons, and new healthcare recommendations say all children should have a sleep study done by a certain age.  Anyway, we knew he was having one in the upcoming months, but they had a cancellation last night so we took advantage of it and went in.

Let me tell you, this is quite a process!  First, we checked in at 7:30pm...right at bedtime.  This sounded great in theory, but there was plenty of paperwork to fill out, and it took an hour to get him set up...not fun with an overtired little guy!  They put stickers with wires on his legs, feet, and chest, and little electrodes (12 maybe??) with wires coming off of them all over his head.  He also had two monitors under his nose, one like an oxygen tube that actually poked into his nostrils, and plenty of tape to hold it all in place.  The best part was the entire roll of gauze that was wrapped around his head to keep all the wires in place...

I couldn't stop laughing at him!  Good thing he's a "go with the flow" kind of kid, because he laughed while I laughed and didn't seem to mind too much once it was all said and done.  I can't wait to show him these pictures when he's older!!!

So, my main question was how the heck the technician planned to keep these wires away from Ty while he slept...I mean, we were there because he is an active sleeper in the first place!  Well, she gathered up all of the cords (close to 20 in all!), pulled them behind his head, and tied them together in a cloth tube sock type thing.  At the other end of the "tube sock" was something that looked like a switch board that all the cords plugged into...and this sat on the bed next to his head.  The tech said, "Don't worry, I cover the board with a sheet,"...like that would stop Ty from grabbing at it!

Well, Ty fell asleep pretty easily after all of that and snored SO loud.  I was glad he "performed" and showed his real self at least!  Around 1am he started moving...he crawled, rolled, sat up and flopped back down, twisted in the sheet, and pulled out the tube by his nose....and slept on that stupid switchboard.  He was not happy, and woke up crying.  The nurse had to come in and untangle him, and I pulled off a wire that had somehow become wrapped around his ankle (one that was secured at his shoulder to begin with!).  This went on maybe twice more, to a lesser degree, throughout the night.  Despite everything, I think Ty actually slept a good portion of the night (though his mom did not!). 

In the morning, I had to fill out a questionnaire about his sleep during the night.  One question was, "Did his sleep conditions during the study differ from his typical sleep conditions in any way?"  How do they expect you to answer that?!  Of course they were different...gluing electrodes to his head, and videotaping him under dull red lights all night is not part of our typical routine.  Pretty funny.

Happy to finally be disconnected! 

 (That's red grease pencil on his forehead, not blood!  We scared Daddy when we got home, though!)

All in all, it was a successful night, and I think they got lots of good data on his sleep habits.  We left with Ty looking like this, because he had mass amounts of glue left in his hair from the electrodes...I couldn't put it down! 

We'll find out the results in a few weeks!

Walk Update!!!

Thank you SO SO MUCH to those of you who have supported our walk!  Both Eric and I surpassed our goals in just 24 hours!!! I am absolutely amazed at the number of people who have come to help us out with this.  We truly have amazing family and friends!!!  If you didn't get a chance to see what we're doing, you can check out Ty's page below!  (He wrote the whole thing by himself! haha)


https://howtohelp.childrenshospital.org/walk/pfp/?ID=MT0169  (Ty's Page)

Down Syndrome Program Walk!!!!

Hi, Everyone!!!  I'm very excited to tell you that Ty, Eric, and I will be walking 7 miles in Boston on June 12th, in the NSTAR Walk for Boston Children's Hospital.  We will be walking as a part of "Team Down Syndrome", representing the Down Syndrome Program that Ty is a part of at Children's.  I don't do fundraisers...well, ever!...but I really, really believe in this one.  Most fundraisers for Down Syndrome that you see throughout the year are for national organizations, which are fantastic, but we don't always see the direct results of those fundraisers on a daily basis.  This fundraiser affects Ty's health and development directly, as well as his little friends who are also a part of the program, and the many many other families in Massachusetts and New Hampshire who visit the clinic.  I have given more specific information on my fundraising page about what exactly donations will go toward, if you're interested. 

Eric and I have both set up fundraising pages in honor of Ty, and we are trying to raise a minimum of $150 each!  The goal of the Down Syndrome Program is to raise $21,000 this year (get it...21st chromosome!).  If every participant finds 21 donors, to donate $21 each, the goal will be met.  Every single penny counts though!!!!  The links to our pages are listed below.  We had to register separately, but they are both for the same cause (and say the same thing)!!!  Even if you are unable to participate this year, please check out our pages to see what I'm so excited about! :)  Thanks!!!

https://howtohelp.childrenshospital.org/walk/pfp/?ID=MK0258 (Kerry's Page)

https://howtohelp.childrenshospital.org/walk/pfp/?ID=ME0121 (Eric's Page)