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

Wednesday, April 23, 2014

Keep on Keepin' On

It's been quite some time since I last wrote a post.  Life has been hectic and overwhelming.  And, quite frankly, there have been some ups, but many more downs lately.  Since I do not want to be using this blog to constantly whine about all of that, I have had a hard time finding something really great to write about. But today, I want to focus on what is real.  So here is really what is on my mind.  For real.

 My own health has taken a turn for the worse, which can be very depressing at times.  I have always been a very energetic, generally positive, Type A-er. But these past few months have challenged both my physical and my inner strength.  Whereas during the course of last summer I was trying to walk, run, or ride my bike at least a few times per week, my body refuses to let me do so much as walk around the block right now.  The aches, pains, and fatigue are getting worse and I have difficulty with many of the basic daily tasks that I used to take for granted, like daily showers.  As a result of my illness, I am currently on an extended sick leave from my career.  So...yes, I do  in fact feel like a caged animal!

Because each day is often a struggle, I usually have to pick and choose what I am going to apply my energy and strength to.  Some days, I focus on simple tasks like just feeding, bathing, dressing, and corralling the little animals, I mean children.  Other days I am able to do some housework or take the little monkeys outside to play.  Once in a while, I may even have a good day and throw in a trip to a museum or the park.  But those occasions are rare.  Plus, they typically wipe me out too much for the rest of the day (and usually into the next, if not longer).

To make matters extra-challenging, cuz, why the heck not?, for as long as I can remember, Prince Charming (my handsome hubby) has been working around the clock.  He has a regular full-time job as an instructor at the local community college, as well as his own business.  He loves teaching the students at the college, sharing his knowledge with them, and he is very good at it.  But his passion is in his business.  He works very hard to provide for our family.  And he works very hard at making his business into a successful one.  He puts in extremely long hours--basically working around the clock.  We hardly ever see him, except for one day each weekend.  Most days, he leaves when the school bus pulls away, and returns after everyone, including me, is asleep.  The children miss him terribly throughout the week, which breaks my heart.  Many days, part of our morning routine includes Chub-Chub standing at the door, tears staining his rosy cheeks as he cries out, "Daddy no go work."  

As for me, I miss having a husband, a companion, someone to share my life and the children with.  I miss evenings together watching our favorite shows.  Or simple adult conversation.  It can get quite lonely, especially late at night once the kiddles are sound asleep, blankies tucked around their tiny bodies.  I also wish that Prince Charming were here more to share in the immense responsibility of raising the children, guiding them to be socially adept, well-mannered, principled, productive citizens.  It would be great to have someone to help encourage and shape their young minds and souls so that it wasn't just on me.  And then, there is also the incredible amount of work and stress of our sweet Miracle Man, whose needs seem to be growing each and every day (my next post will be an update on him).  I would love to be able to share that responsibility with Prince Charming, too (or at least have a break from it every now and then).  But right now, I am on my own.  And that's the way it has to be.  Prince Charming is doing what he needs to do for our family.  And my job is to keep on keepin' on! 

Many people I talk with tell me that it's as if I am a single mother.  My reply is always the same.  Yes, it does feel like that most of the time.  However--and this is a pretty big HOWEVER--at least I am not paying the bills myself, too.  I do not have to hold down two jobs and take care of the kids at the same time.  I am very fortunate in that way.  And being home with the children right now while I have my own medical issues is certainly not easy, by any stretch of the imagination.  But at least my children are not depending on me to bring home the bacon, as well as wipe their bottoms!

Despite the dreariness of all else that has happened, I will say that there has been one incredible "positive" that has occurred since my last post.  I have been very fortunate to have a mother's helper come into our home to help me out several days per week since the end of January.  I will call her Sunshine because she has been as fabulous as the first sunny day after our long and dreadfully cold winter!  She helps take care of the kiddles:  getting them dressed, bathing them, giving drinks or snacks, playing with them, reading to them, helping Little Miss with her homework, and helping me cook or serve meals.  Sunshine also helps me around the house doing whatever chores I need her to do on the days that she is here.  I have really come to rely on her immensely!  So much so, that the days that I don't have her...well, let's just say that it's that  much  harder  to handle everything all by myself now that I know what it is like to have an extra pair of hands around! 

Keep on Keepin' on,

Marathon Momma

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