First Trip to Storyland (Glen, NH)

This weekend we went to Storyland in Glen, NH (~5 miles from our condo).  It was great fun!  We went on Saturday afternoon and then on Sunday morning.  Definitely the kids and parents were exhausted after 3 hours at the park!! 

Some major perks about Storyland:--

a)   If you buy your ticket 3 hours before closing, it is good for the next day.  (yipee!)

b)   If you take your 2 year old, she's FREE.

c)  If you take your hearing impaired child, she's FREE.  (super lucky there).

d)  If you take your hearing impaired / physically impaired child on the rides, she is treated like a VIP (she even gets a VIP pass).

(VIP means that she can go in the EXIT and skip all of the queues!!)  We had a fantastic time on our first trip to Storyland.

Dad helping Alexis enjoy her horse ride! 

Jessica enjoying her horse ride! 

Alexis and Dad on the Flying Shoes!!  Alexis loved the shoes!!!

Jessica making a raspberry when Mommy gave her a hug. 

Jessica driving us around the farm!  Alexis was the copilot and Mom and Dad rode in the back.

Alexis enjoying the Ball Pit!  She loved it!!!!

Matt and Jessica - both being very cute!!! 

Radiology Tour -- Alexis Style

Alexis toured the Radiology Department today.
1. Ultrasound to review her abdomen
2. X-ray to review her abdomen
3. X-ray fluoroscopy to review her stomach, small and large intestines
These appointments were scheduled as 9:50, the 10:15 -- but you can imagine that Alexis style means that we were there from 9:45am until 2pm. 
The ultrasound went fine, the x-ray went fine.... but then started the fun.  Looking at live pictures of her stomach emptying and  then the flow of barium into her small intestines.  Alexis' intestines are really in the right order, or at least not as far as the doctors could see.  So we took a break (I got lunch), Alexis got to hang out with me.  They were hoping that the barium would move further through her system.  It did!  And I think that made them even more confused.  We went back for a simple x-ray and then we took more fluoroscopy studies.  And we left without knowing anything more than we did before we went -- they would need to review the video over the weekend, compare it to the studies that were done in 2007 and then try to compare it to the studies that were done in 2006 when she was in the NICU. 
Some commentary on the video -
a)  Alexis seems relatively pleasant during the first two video clips.  She wasn't allowed to have food after 4am, so she was starting to get rather grumpy with no food.... that is the growling, it means "I'm hungry!"
b)  I sound like a dork.  That is my mom-talking-to-Alexis voice.  I hate it, but Alexis thinks it's cute.
c)  Alexis is not wearing her glasses because she chewed on them and they were dropped off earlier today to get the lenses replaced.  Alexis is not wearing her hearing aids because they were moving her around a lot and it wasn't worth putting them in and then having them whistle / or having them interfere with any x-ray images.

Hope you enjoy!
Catherine


http://www.youtube.com/watch?v=T9PpLKe4pIs

Slow Radiology Day

Alexis and I are at the hospital... for routine tests ordered by her GI doctor.  Well, routine tests = very slow in Alexis protocol.
We did an abdominal ultrasound, then abdominal x-ray, then they did fluoroscopy study with barium inserted in her tube....  Amazingly, all of the tests were carried out on Philips equipment (yipee!)  I took some video of Alexis (our super-model) showing of how the equipment works. 
Naturally during the last test, they decided that her anatomy is so weird that we have to wait until all of the barium is through her system.  So, we had lunch at the hospital and are now waiting for Alexis' bowels...  And of course, they think we'll be done at 1pm but I know Alexis better, she has her own protocol.
So, I will post more later when I get home (which is after picking up her shoes from school, picking up her glasses from glasses place - getting new lenses and then going home).
Catherine & Super-model Alexis

Alexis Unplugged (All Acoustic Alexis)

http://www.youtube.com/watch?v=-KMbEEXOsB0

Alexis playing Dad's guitar, please note that while she is leaning on Dad she is using both hands and very intent on playing the guitar herself. 

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.
http://www.youtube.com/watch?v=piOaPysAjsU

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. 

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.

http://www.youtube.com/watch?v=z0N_YDlKeq4

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!!

Catherine