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!

Tackle!!!

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 (http://www.pega.com/).

Her request was http://www.amazon.com/Diggin-00130-Wobble-Deck/dp/B000GAYMDA

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!  

http://www.youtube.com/watch?v=rv6sbXgSi4k&feature=youtu.be

A delightful day!!!

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.

Catherine

Photo Catch-up

These are photos from my camera, some that have been posted to Facebook, sorry if they are repeats for anyone. 

Photo from the Summer sometime.  This is how Jessica naps in the car when it's too bright outside.  She is under there :)  When there's a will to sleep, there is a way :)

Cell phone picture of the Tower at Perkins.   I was exiting the building from a door that I don't normally use and it was really spectacular.  

Picture of Jessica and Matt walking along the new Methuen Rail Trail.  She's getting tall and skinny like him.  Very cute kid. 

Alexis working hard at PT trying to get to one of her favorite toys.  This is a really cool skate board device that she has to propel herself forward.  She really enjoyed riding on it, but preferred spinning in circles.  

Alexis riding her bike at PT as well.

Maybe a less fuzzy picture of Alexis riding her picture.  

Jessica's Kindergarten school photo.  It has a reflection on it because of taking a picture of the picture.

Alexis working hard at OT, drawing on a page with chalk.  She was doing it all herself!

Getting ready to overtake the neighborhood for Halloween.  A long journey around to all of the houses, but we did it!  Halloween got rescheduled and Matt was out of town.

Missed October - Maybe catch up now

I didn't literally miss October, but I was definitely missing in action.

We are all doing well.  Alexis has been very busy at school and same for Jessica.

They are both growing up so fast, it's hard to believe.  We have many fun days with Jessica telling us things like "I had to go into time out at school... (but then no further description)."

And then Alexis is doing so well, it's hard to believe that we struggle with so many things.  Friends have been posting "Things to be Grateful" - I can't even stop to process all of the things that we are grateful for when it comes to Alexis, her progress and her health.

One of the great leaders of the CHARGE and Deafblind community posted a .pdf file for Swedish CHARGE group - it was fabulous, I had to stop and write about it and post this on the blog.  I hope all of 

our friends will see it.

CHARGE officially is an acronym of the typical diagnosis areas:   Coloboma, Heart defect, Atresia choanae, Retarded growth, Genital hypoplasia, Ear anomalies

The brochure says:

Cute, Huggable, Adorable, Resilient, Generous, Extraordinary

It is a similar message to this post -http://childrenshospitalblog.org/our-patients-stories-a-is-for-alexis/

- that Alexis is more than her diagnosis, she is more than words on a paper, she is unique, wonderful and inspirational.

Hope you all enjoy,

Catherine

Jessica at Heart Walk

Hi all, I know you enjoy seeing cutie-pie Jessica photos.  I'll have to take some of Alexis over the weekend to balance out the "Jessica collage" we have going on these days.

Hope you enjoy - this was at the American Heart Association Heart Walk in Boston.

She only showed off her scar from Open Heart Surgery once.  But she did demonstrate some dancing.... thankfully not on the main stage.  

Jessica First Day of Kindergarten

Here are more photos from the real camera for Jessica's first day of kindergarten.  I can say that she definitely takes after me about being a ham for the camera.  She was sooooo excited.

Since our morning routine includes the following....

6am Matt awake

6:15am Alexis awake

6:30am Alexis bus to school

Jessica gets up sometime between 6:15 and 6:30.  That is entirely too early for 8:30 school time.  So I decided we would go for breakfast before her first day of school.  She loved it.  Enjoy the photos!

Catherine