Boston Children's Hospital - Year in Review

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

http://childrenshospitalblog.org/thriving-in-2012-a-year-in-review/

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!!!

Catherine

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

Jessica Spin-Dance

Jessica Spin-Dance from the other morning.

She loved her dress and was spinning around the house.

I had to stop the camera before the crash so that I could help her up off the floor.  She's definitely got my coordination, ah well.

http://www.youtube.com/watch?v=I-vAZUATfkw&feature=youtu.be

Catherine

Long Distance Crawling Champ - Alexis

Alexis is now the official Long Distance Crawling Champ of our Living Room!

Here's a video

http://youtu.be/jR0VkPUeaDs

(please unfocus your eyes for Jessica's baby-toys zone... it is pointless for us to clean it up, because she dumps everything out immediately)

Instead, be amazed by Alexis the Awesome! :)

So proud, but I know we have to do some massive child-proofing (I was going to write baby-proofing) but Alexis is definitely a child!

Watch out for her at school, Perkins family!  She'll be at the computer and keyboard when you're not looking....

Catherine

A is for Alexis

By now, some of you may have already seen this - but in case you haven't.  I was included on Children's Hospital Boston's Thrive Blog as a guest blogger.  

I hope you all enjoy the article:

http://childrenshospitalblog.org/our-patients-stories-a-is-for-alexis/

As you all know, the road with Alexis has been hard - but worth every moment of it.  Thank you each for all of the prayers, great comments and well wishes - we need them from you.  I've said before that it takes a Village to Raise our kids.  Thanks for helping be our village, and now thanks to 3900+ likes on Facebook for Children's link - it's getting even bigger.    (their post to the same article is here:  http://www.facebook.com/ChildrensHospitalBoston)

Catherine

Camp Photos - Dream Day on Cape Cod

Pictures from Camp

Monday Activity - Whale Watch!  Matt got lots of other pictures, but they really don't do it justice.  We probably saw about 15 different Whales.  It was spectacular!

Jessica actually sitting still for about 1 second.

The girlz.  :)

 Tuesday Nickerson State Forest Pond - Beach..... (it's fresh water with sandy entrance)

hot pants Alexis.  unhappy in the pond water.

Bathing girls.

Alexis with Dad's sun glasses on.

Jessica was our water baby for this trip.

Wednesday: Fishing on the Dock

Thursday: Face paintings.  Jessica is a puppy, a cute one!  

Alexis had a flower on her hand but wiped it off about 15 seconds after she noticed it.

Camp Photos tomorrow

This past week we spent time on Cape Cod, but not like a normal vacation. 

A Family Camp for special kids, with special counselors and great activities.

http://www.capecodonline.com/apps/pbcs.dll/article?AID=%2F20120803%2FLIFE%2F208030307%2F-1%2FNEWS

They also have a Facebook page, enjoy

http://www.facebook.com/pages/Dream-Day-on-Cape-Cod/47921865805

They welcome families from all over - so apply and come visit Massachusetts.  We actually got Alexis to go in the Ocean - a first!

Alexis Crawling!!! I caught her!

I have a feeling that in the near future, I won't so leisurely be able to grab the camera and videotape her.  Alexis is on the move!  

Hope you enjoy the sound track.

 http://youtu.be/1sY3E7WU_6I

(Matt is golfing so I get to listen to "Mommy Music" in the house, in surround sound - I had actually turned it down while Jessica was sleeping)

So proud.  She had already crawled over to Matt's TV, but I didn't have the camera ready.  

Jessica's Graduation

Hopefully now you are all realizing that I'm catching up on a couple of weeks of pictures.  Here is Jessica's graduation from June 15th.  She was in a Preschool program at the Tenney Grammar School in Methuen.  

Here she is "waiting patiently"   

And distracted by mom with the camera. 

Here's Jessica with her graduation package.   

And they sing a song. . . . She was so happy.  She's so sad that she'll be missing her other school for the rest of the summer and next year.  She kept asking when she would go back.  

Father's Day Weekend

Over Father's Day Weekend, we went to East Hill Farm in Troy NH.  

It is a great family farm, I summarized it as "Dirty Dancing meets Farm".  It is all inclusive - all meals included in the room rate.  It was wonderful!  Snacks and yummy treats the whole day (=bad for waist line).  

View outside our window, that's Mt Monadnock in the background.

This is Jessica's favorite spot the whole weekend.  She loved the swings! 

Alexis came to sit with Jessica. 

Alexis wanted to find her toy.  

Unfortunately I wasn't paying attention so I missed the photo op of Jessica with Cathy the Cow (who has since had baby June - http://www.facebook.com/easthillfarm) 

Cathy was a very large mom cow, now we understand why.  

Here's Matt with one of the horses.   

Feeding the Donkey.   

Matt having a moment with the donkey.... 

Feeding our favorite the sheep..... BAA!

The PIGS.  Smelly!

The other sheep! 

The ball court, where Matt played dodgeball all afternoon.

Alexis was a spectator.  And Jessica either played on the swings or did crafts with me. 

It was great family fun!  It was really a great fun.