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Friday, April 25, 2014

Dreamland..Or Bust!

To try and sum up the past few months for Miracle Man seems a daunting task.  We have been to countless doctor's appointments, had several rounds of blood taken, and several different other types of tests done on my poor little guy.  He has made progress, and had setbacks.  There is just sooooo much to share that I think the easiest way for me to do this would be to take it one step at a time and update you over the course of several different posts.

So...Miracle Man has been having a real difficult time with balance.  And it has been extremely challenging figuring out the source of the difficulties.  We thought the tubes being placed in his ears would help with the balance. And, while it did  make it easier for him to hear better, the balance issue has only seemed to have gotten worse over the past six months.  In addition to his lack of balance, Miracle Man has been extremely lethargic.  He has difficulty staying awake, paying attention.  He yawns all day long, regardless of how much sleep he has had.  Too, he wakes frequently throughout the night.  With all of these factors coming into play, we were sent by the neurologist to have a sleep study done. 

We met with the doctor at the sleep/wake clinic and she concurred that a sleep study would be helpful in finding answers to our questions.  So a sleep study was scheduled, and in January, Miracle Man and I went to the sleep clinic for the study.

It was a very strange experience, if you've never been to one before.  It was sorta like going to a hotel.  But also sorta like being in a hospital.  And a bit  like being in a fishbowl, too.  When we first arrived, the technician that would be performing the study showed us our room, which was setup very much like a hotel room.  There was a bed, some nightstands, a few chairs (one of which pulled out into a bed), a wardrobe to store your personal belongings, a tv, and a private bathroom. 

Once we settled in, our technician came back into the room and explained how everything would go.  He explained that Miracle Man would be all hooked up with wires and electrodes and that while Miracle Man and I were sleeping, he would monitor the data, as well as listen to the sounds coming from our room.  He said that if we needed anything, we could just talk to him as if he were there in the room because he could hear us.  Hmmmm...that's a bit strange, but okay.  Naturally, our technician then proceeded to tell me about how he would also be monitoring Miracle Man's movements through the video camera.  Ummmm...wait !   What?!?!  Okay, now that's a bit downright cReEpY!  Of course, we were  there to gather information on Miracle Man's sleeping patterns and habits, but I was not so sure about how I felt about that video thingy...considering I would be sleeping in the room, too!  We needed the data on Miracle Man, though, so it left me with no choice but to be monitored in my sleep, as well!  Yikes!  I felt compelled to tell the technician that I don't snore very often, but to please let me know if I do or if I don't...one way or the other I needed to know... because Prince Charming likes to tease me that I snore allllllll the time!  (For you curious cats out there...no, I didn't snore that night!) Yipppeeee!!

Once we got through the explanation of the procedures, our technician began bringing in wires and electrodes to attach to Miracle Man.  My little guy actually handled it waaaaayyyyy better than I thought he would!  He sat calmly on my lap while I read to him and the tech hooked him up.  And I was beginning to think this might actually  work!  The tech attached all but a few of the wires and devices, leaving the ones that attach to the face until Miracle Man had arrived safely and soundly in Dreamland. 

Well, as fate would have it, just as he was packed, seated, on the runway, and ready for take-off, our technician tried attaching the remaining wires and the wheels of the plane came to a screeching halt.  There was simply NO WAY Miracle Man was going to continue on his blissful journey to Dreamland!  He did not like the newest attachments one bit!  Of course, could you blame him?  I wouldn't be able to sleep with all of those things hooked up to me, either!  In any case, once Miracle Man realized what was happening, he began pulling off the wires that were on his face.  And, naturally, what do you expect happened next?  Yep...he became aware that 1) he did not like having ANY of the wires or electrodes attached to him, and 2) that he could simply pull them off!  Screeeeeeech! 

And that was pretty much the end of that sleep study.  We were told at this point that there was no use in continuing the study with Miracle Man since the doctors needed to have at least 6 hours of data.  Considering that we had to finish the study by 7 am (and it was well past 1:30 am now), it wasn't going to happen.  We would have to reschedule. Bummer!  After all, it is really challenging arranging everything to make it possible for just me to take just Miracle Man somewhere and have the other children taken care of!

Secretly, though, I was not disappointed in the least!  Even though I didn't get very much sleep that night, and even though it was difficult to arrange the scheduling of everything, being there with just.one.kiddle felt like a...VACATION!  Hahaha!  So schedule another sleep study you say?  Sure thing!  ABSOLUTELY!! Sign me up!  (Yes, I do realize that's a sad state of affairs right there!)

Heading off to my own Dreamland now,

Marathon Momma

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