We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Monday, May 16, 2011

Say whaaat?

It has been a long slog... For those who follow my blog, you'll remember our months and months of sleepless nights. Our excellent sleeper (read: Malakai) did a full 180, and became a not-so-excellent-sleeper.

Here is my sheepish conclusion to our sleep-debacle.

Malakai has mysteriously started sleeping well again. How? Well, damned if I know - seriously. I wracked my brain (and doubled my caffeine supply) for months trying to figure out what was going on, I visited many doctors and came up with many hypothesis (in the complete absence of any of the doctors taking me seriously or proposing a solution that worked).

I must say, initially I wasn't concerned. I put his lack of sleeping down to teething, a new brother, winter colds and flu - y'know, the regular stuff. But then it went on... and on... and on... and it got worse with more frequent wakings and more moaning and less and less of the good stuff - sleep.

I went from mention his sleep issues in passing during routine check-ups, to specifically asking his doctors if there was something we should be looking at, to taking him for specialist tests and researching the Internet for answers, links, clues - anything.

Eventually I recorded his nighttime antics and got Malakai to a friggen expensive paediatric neurologist. Eventually! A doctor who agreed that what she saw on the video tape was very concerning - at last, someone believed me! At last, I didn't feel as though I was making this all up - she saw it too!

And then what happens? A week later Malakai starts sleeping through again. Mysteriously. Without any warning... much to my excitement and I must admit - dismay as well. Why? Well, now I do feel like a completely neurotic attention-seeking mother... and I don't like it. Because I was worried, for months!

So, we did a sleep EEG and sleep study anyway - just because it was scheduled and we had the very expensive doctor's expert assistance at hand. And, the tests came back clear - good news and all.

So here we sit with the mystery of the 9 - 10 months of no sleep, the disturbing sleep behaviour that even had a paediatric neurologist concerned, and it all just disappears. I give up. Is it possible for sleep issues to occur, disappear and then reoccur? Well? I can't say because honestly I am sick to death of trawling the Internet for information... I am all infomationed-out.

I am, however, open to the notion that because Malakai has Down syndrome I may take things a bit more seriously. And yes, many doctors looked at me as if I was crazy - "your toddler isn't sleeping? ha ha ha! join the legions of other mothers..." But I have a problem with anything that can potentially put a bit more distance between Malakai and his Full Potential (that shiny thing in the distance that is currently just a fuzzy concept...), and months of sleep deprivation does not a healthy learner make... So, yes, I think I may have been more concerned about it than I would be if Harlan suddenly decided to stop sleeping (that is, of course, purely hypothetical, because he has never slept well).

Am I the only one out there? Or are other mothers who've been blessed with children with special needs as anal and demanding and fierce as I am when it comes to their kids? I don't think I'm alone... I hope I'm not alone...


Jennie said...

Ha! You're not alone. But your suggestion for ibuprofen was working a bit for Micah. He can't take ibuprofen while his leg is healing, though. :-(
But you're wise to have been concerned. I completely agree... sleep deprivation is NOT a good thing for brain development.

Pamela Harnish said...

Thanks for your update and you are DEFINITELY not alone....I think because of Jacob having down syndrome I tend to worry much more about things. Have a great day!

Michigan, U.S.

Cathy said...

While I'll let things go for myself, not for my kiddo!!

Beth said...

Well, I'm glad that everyone is getting sleep again, but how frustrating to get all the way to the sleep study level for Malakai to change directions! That kind of thing seems to follow me too--by the time I actually invest money (for the appointment/treatment) the issues dissolves.

You aren't alone--there's no way to tell which issues are going to be tremendous and which ones are benign. There is a sense of "must be on low level guard duty" all the time.

You will relax some more as M. grows up--there will be other adventures to fill your mind!