Tuesday, April 27, 2010

Our new toy.... Flip Video -- Alexis in 1st Baseball Game

So, I'm thinking you all are now amazed at all of this video content.  About 1 month ago, I bought a Flip Video and I can't say enough great things about it!  It's absolutely wonderful, easy and I think I can teach Jessica how to use it. 

This weekend Alexis participated in her first Little League Challenger Baseball Game.  We were highly encouraged by Alexis' Perkins classmates (ok, technically their parents) to sign up Alexis.  It is about 20mins from our house (without traffic) and so we were a little reluctant (it is on weekends afterall).  So, Alexis played in their practice game on Saturday (after a parade).  It was fabulous weather and Alexis scored a run.

Please note that as a Challenger Baseball League I think every kid gets to score a run, but Alexis was the cutest (in our eyes) to do it!  :-)  And she's on the RED SOX team.  And has fancy #1 jersey to prove it and even the cool red pants. 

Saturday, April 24, 2010

Alexis and her new Touchscreen.....

Alexis is working hard at school and home on ELO Touchscreens for computer skills.  She is using a website called http://www.helpkidzlearn.com/.  She is doing really well with it, and we are lucky that she is interested.  These skills will help her to eventually use computers and even a communication device that could speak for her.


Tuesday, April 13, 2010

Alexis' Friends in CHARGE

Many frequent Alexis blog readers know about Moriah, one of Alexis' buddies in CHARGE syndrome.
Moriah has basically been in the hospital November 2008 after having major heart surgery done by Stanford Hospital doctors.  Moriah and her family are troppers.  They show love and goodness in each and every day.
Moriah has the "typical" fighting spirit that makes all of us families proud to know Moriah.  Moriah needs a trach and a ventilator to help her and because the Northern California Bay Area doesn't have home-ventilator service -- Moriah is still in the hospital.  They will remain there until Moriah is strong enough to be without a ventilator. 
Their situation horribly pains me since Alexis was home at 2.5 months and had other hospitalizations but all relatively minor.   For those who haven't had a baby in the hospital for an extended period of time, this is like one day taking your child to work and then accidently leaving them there with strangers.  I mean, we all like work, like to go to work and manage to get ourselves to work, but it's work.  It's just that.  But now if your child is stuck there, you're going to get up early in the morning to get there to see them.  You're going to stay all day as much as your weary body can handle it to be with them.  To have to "drive" to visit your child and to leave your child each night, it's really horrible.  Victoria and Justin have been doing that every day.
I sent Victoria an article (Being a Kid: Thriving with a Trach and Vent by Deb Millard) that she shared on Moriah's blog.  It speaks to the struggle and the ability to manage a Trach / Vent at home with a relatively active child.
While we don't always discuss Alexis' medical details here, sometimes they bore me.  We have avoided a Trach and we have avoided a Vent.  But Alexis sleeps every night with a CPAP, which basically dictates our family routines and activities.  In a lot of ways, we've had the easy way out - but I can feel the struggle that Victoria and Justin go through to provide the best for their daughter.  It pains me to know that they don't have the joy of having Moriah playing happily in the next room (like the videos we get to show of Alexis).  It also pains me that these services (home vent care) are available in different parts of the country but not everywhere, meaning that Moriah has to stay in the hospital. 
Moriah is a blessing.  Alexis is a blessing.  We hope that one day we'll get our lives arranged so that they can meet.  I'm sure they'd have an awesome dance party!!


Friday, April 9, 2010

Alexis having a good time... Part 4 of 4

Alexis on her new sit-and-spin and lots of giggles....

Thursday, April 8, 2010

Alexis having a good time... Part 3 of 4

Alexis spinning the furniture at home....

Wednesday, April 7, 2010

Alexis having a good time... Part 2 of 4

Alexis and her friend riding the swing at School on Friday.

Tuesday, April 6, 2010

Alexis having a good time... Part 1 of 4

Alexis having fun at school.... in OT.

Monday, April 5, 2010

Easter Egg Hunt - Alexis and Jessica

Another You Tube video of Alexis and Jessica on the Methuen Easter Egg Hunt. 
Alexis is already working with the local politicians -- Mayor Manzi (he had a lot of Easter Eggs for little kids that couldn't move fast enough).  Jessica LOVED the Bunny!

(P.S.  This is my first attempt at video editing, please be nice with the comments, this is the top 10% of the footage)

Easter Family Pictures

sitting pretty before church
Sitting again.
Family picture
Getting a little distracted...
Alexis sitting pretty after church!

Saturday, April 3, 2010

Beautiful Weather

Today was a beautiful weather day.  It was supposed to be in the 70s but my car thermometer said 86.  That's awesome considering we can still get SNOW in Massachusetts in April.  So, we enjoyed ourselves.
We took a walk around the neighborhood - Alexis strolled and Jessica rode her tricycle (but it vibrates too much for 1.2 miles and she has to get on and off several times). 
Then we went to Methuen's Easter Egg Hunt.  There was one set up for the Preschoolers/Kindergarteners.  It was great fun.  Jessica and Alexis picked up about 4 eggs before all of the eggs were all gone.  Alexis and I made a bee-line to the Methuen Mayor who put 6 more eggs into the basket!  The Methuen Mayor actually lives in our neighborhood.  He was impressed with Alexis' walking with her walker!  Hopefully when we go Trick-or-Treating this year for Halloween, she'll be able to use her walker.  (that's a 1.2 mile loop).....After the Easter Egg Hunt, we had a brief picnic/snack at the park then came home for real lunch.
After lunch, the kids ran around outside and then Jessica was exhausted and took a nap.  I went out for errands and got a lot accomplished.  Matt stayed at home with the always-pleasant kids.  :-) 

In other news, I went to Alexis' school for the whole day yesterday -- it was so exhausting.  They made us do a loop around the TRACK for gym class.  Ok, they didn't make us, but we did it!!  Alexis is doing an awesome job pushing her walker and keeping up with it.  She's not great steering, but she also gets really distracted people or thing-watching.  She had PT, OT, and cooking yesterday.  She did great in PT and OT and then tried to sleep in cooking.  I helped her taste-test her cooking.  Yum! Yum!  After cooking, she had an impromptu dance party before going home with mommy.  All-in-all, a great day!  We skipped Friday after school PT on Friday, good thing, I got to go to bed early!

Tomorrow is Easter and we've already gotten the kids in bed so that we can all get up for 7:30 service.  Then we'll get to go to breakfast, yum yum.  And then nothing scheduled tomorrow... maybe some naps :-)

Enjoy the weekend and if you're in New England, enjoy the beautiful weather!