The Amazing Owen
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Merry Christmas

I thought that this Christmas deserved a special season's greetings message from us.  If you follow the archive links to the right, you will see that last year at this time Owen was Seizing Thru the Season.  It was one step forward and four steps back.  I believe I described it as "The Long Dark Tea Time of the Soul" (quote stolen from author Douglas Adams)  Not fun.

This year was shaping up to be the same way - from September until mid December he was unable to stay awake more than a few hours a day.  We couldn't figure out why.  We had pneumonia, poo issues and vague symptoms.  EEG after EEG, CT scans, x-rays, the works. 

But then things turned around.  We got the poo cleaned out and that solved the pain issues.  And then we got the big answer.  He wasn't sleeping due to shunt problems or seizures, it was mono.  The simple, obvious, and we never thought about it because 5 year olds don't usually get mono, but this 5 year old spends a lot of time in germ infested hospitals and doctor's offices.  But eventually I started showing the same symptoms that Owen was.  I was exhausted for no reason.  I went to the doctor and the blood test confirmed it - I had mono.  We had the same test done on Owen, but it is inconclusive in young children because they don't produce the same antibodies.  But with me testing positive and him starting to perk up in just the right timeline for mono to be overwith, it's a pretty certain thing. 

And so now Owen is slowly coming back to normal.  He is staying awake all day and he is moving around more and more.  It is taking time for his strength to build back up, but he is getting there quickly.

But wait, there's more!!!  It has been 2 months and 22 days since his last seizure.  This is an unprecedented break for us.  Between the VNS, the new meds and Jigsaw's help, Owen has finally managed to get enough of a breathing space to be able to thrive again.  This alone would be an unbelievable Christmas present!

These pictures are from Owen today:

Owen taking a cookie out of a bag all by himself.  It may seem simple to you, but this is a complicated task requiring him to hold on to the bag with one hand and to reach in with the other to grab something he can't see.  It was a task that he finally learned how to do a few months ago, but then stopped doing again while he was ill.  At 5 years old he has finally truly mastered this basic task.  He spent his morning happily pulling animal cracker cookies out of a bag.  Hey, it's Christmas, he can have cookies if he wants to!


And Owen just loves to push buttons.  He can't play the games or follow the instructions that the toy is giving him, but he knows that if he pushes buttons things make sounds or flash lights and he likes that:


His friend Mya sent him some jingle bells that he had a wonderful time with:


Recently Ms. Pat, Owen's special ed teacher, started trying him out with an iPad.   I have downloaded the same apps onto my iPhone to help him start to learn the basics.  The best one is a virtual xylophone where you just have to touch the screen and it will play tones.  Owen isn't up to touching specific spots to make specific things happen yet, we are just trying to teach him to touch the screen to cause something to occur.  He is learning and he likes the xylophone sounds.  Grandma and Grandpa recently got an iPad and here he is with Grandpa trying out the xylophone (Music Sparkles is the app name):


So this Christmas we are counting our Blessings.  Having two healthy kids who are home for the holidays and doing well makes this an awesome Christmas!


Merry Christmas to all, and to all a Good Night!

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