Monday, December 31, 2012

Boston Children's Hospital - Year in Review

Alexis' Story made it in Boston Children's Hospital - Year in Review - absolutely fabulous!

2012 going, 2013 coming

Bittersweet the last day of 2012, it's been an exciting year for us.  

Another great year where Alexis made it through without any unscheduled hospitalizations.  Since she hasn't had any surgeries since June 2010, we're getting to be a little blase about being in the hospitals.  The memories are still fresh of the days that we were in the hospital numerous times over the years.  We are lucky that while she fights the normal colds, she is able to do them at home.  I really credit her CPAP to keeping her safe and out of harm's way on breathing and respiratory items.  I also think that we are probably hyper-vigilant on how much Alexis is out of the house in the Winter and who she comes in contact with (we try to limit the visits to the hospital, or to places where there might be 'germ-warfare'.)  We just know that it's not worth the pain later to have Alexis in the hospital for an infection.  By writing this paragraph, I'm sure to have jinx our 2013.  

Jessica was our 'fun' and exciting medical child this year.  In November 2011, they weren't able to repair her heart defect via catheterization - so we ended up scheduling her open heart surgery for April.  Little did we understand when the doctors said that "little kids are resilient" - what that meant.  When Alexis has had surgery in the past, she's bounced back but not nearly like Jessica did.  Six hours after the surgery, Jessica was walking around the ICU - with chest tube, with all sorts of monitors.  What an adventure.  She made it out of the hospital in two days.  As a precaution, we kept her out of school for a couple of weeks - but she was absolutely fine very quickly.  The scar now is smaller than one of the lines on the palm of your hand.  It's that small.  The ironic thing is it's in the shape of an exclamation point - a line and with a dot (the dot is where the chest tube was).  Jessica is definitely our exclamation point child.  Matt, Alexis and I can be in the house all quiet, but Jessica arrives like a tornado.  Love that little Tornado!!!

I start a new job with Philips.  I'm working for both Philips Healthcare and Philips Lighting to create the LightAide, which is a product intended to help children with visual impairments.  It is very gratifying to have a company that believes in my work and allows me to really meld my experience with Alexis into my day-job.  It will be a challenging year, but I think we'll be able to do great things this year.  Stay tuned.  :-)

Matt isn't here, so I can't ask him for his year in review.  But I can say he's been a fabulous husband, dad and super-worker-bee.  He's ever-present in Alexis and Jessica's lives - he's always setting the cadence for family time and traditions.  He's always reminding me if I'm stretching myself too thin.  He's doing great things at work (this is where I would ask him to tell me what to write there).  And in December, for a second year, Matt and Matt's company hosted Alexis and her peers of medically fragile kids for the Annual Holiday Party.    It was a fantastic time, he does a lot of work for that project in his free time and this year 25 families were able to participate.  It was fantastic!

So, if the way the year ends is the way the next year goes then --
Jessica will be on many field trips - today to the Harvard Museum of Natural History.
Matt will be at the office to set up some chemistry.
I'll be in my pajamas blogging :-)
And Alexis will be getting ready to go to PT :-)

Happy New Year My Friends!!!

Tuesday, December 25, 2012

Merry Christmas!!

Jessica Princess Jewelry from her Prince Brady!

Mom, Alexis, Brady and Keith opening and playing :)

Jessica mid-talk :)

Jessica still talking...

Jessica and Alexis at the Christmas Tree on Christmas Eve.

Jessica and Alexis at Christmas Tree.  Jessica gets that face from mom.  All me.  

Alexis sitting "tolerating" photo time.  She's never really thrilled when fancy party dress comes on instead of pajamas at 6pm.

Good night Elfie!  See you next year! 

Jessica thinking of the trouble she may get into after Elfie goes back with Santa! :-)

Santa Comes!!!

Jessica and Dad waiting patiently :)

Jessica getting all excited!


Wednesday, December 19, 2012

Alexis School Jubilee

Yesterday, Alexis participated in her 4th Perkins Deafblind Program Jubilee.  It's their Holiday fair with a ton of fun activities including a visit with Santa.
Alexis got a wonderful gift from generous donations by Pega Systems Boston (
Her request was
She's probably not going to enjoy her 10 days at home after we start working with her and this present (you can't see it clearly but it's balance board with a ball under the center to it's constantly off balance).  But it makes noises and has different programs, so hopefully she'll think it's "interesting" and odd that her feet are making noises.

Finally, I'd like to share a video with you all.  It's Alexis in the Sleigh Ride.  She loves it, she watched it go around with her school-mates 3 times and then was so delighted it was her turn!  

A delightful day!!!

Sunday, December 16, 2012

7 years ago

The nation mourns the loss of beautiful children.

7 years ago, we lost Kaitlyn during my 29th week of pregnancy.  7 years ago, I was being transported between hospitals to assure that Alexis would not be born prematurely or that she was suffering as a result of her twin sister's death.

Alexis has shown us the spirit of a fighter.  We know that we all must fight together to keep kids like her safe.  Alexis is the age of the kids who died in the rampage on Friday.

A simple post, but one from what I have been bogged with for the past couple of days.