Thursday, December 31, 2009

Jessica - Ski Bunny

On Monday, we were at the condo and we took Jessica skiing for the first time. Ok, technically Matt took her skiing because people who know how I ski would understand that I'm not trusted to care for a 2 yr old while skiing. (I ski like a mad woman, it's very true).

This is a picture of Jessica on her first "run". She's very concerned.
This is Jessica being a cool dudette skier on her 2nd run. Matt and Jessica did 6 bunny hill runs, she did very well. Thankfully Matt is twice her height and managed to manuever in a way that he was still able to use his back the next day. Could you imagine skiing with your hands on the ground? That's basically how Matt was skiing. Anyway, we hope that Jessica will practice in our back yard more and be ready for full-on skiing next year. We'll probably take her back out for some bunny-work as the ski season progresses.
Hope you enjoy! We're all back home in Methuen. Jessica went to daycare today so that Matt, Catherine and Alexis can get some projects done. We'll see, so far it's very quiet.
Catherine




Thursday, December 24, 2009

Photos of Kids

Jessica enjoying "PT" at Perkins Jubilee.... BIG SMILES!


Alexis with smiles during "PT"! :-)
Jessica "geared" up for snow-play. She enjoyed being in her outfit!

Jessica not so thrilled about being out in the snow storm, and we only got about 5"!

After playing outside, "Spinning" in the chair. They love it!!!!







Family Videos -- Silly Girls (Jessica)


video

So it's bad video taping since Jessica was helping, but she's too cute not to feature in her own movie!

Catherine

Family Videos -- Silly Girls (Alexis)


video

Jessica had just removed Alexis glasses, and it was about 15mins before bedtime. You can see Alexis entertaining herself with her electronic keyboard. ENJOY!!! Hope her laugh makes everyone laugh as much as it makes us laugh!

Tuesday, December 15, 2009

Why it's important


People sometimes ask me, "you had a great job working from home and balancing everything with Alexis, why did you change?"
People sometimes ask me, "how do you do it all? where do you find the strength to advocate for Alexis?"
I found this in my reading today, it summarized the answers very well.
I am passionate to find the resources for Alexis because I am passionate about Alexis.
I am passionate about working for Philips because they have brought and have the capability to bring new medical technology to help kids like Alexis.
I have seen mothers and fathers do things they never thought were possible because they had to do them for their children.
I have an awful trait that I speak my mind (a little too directly a lot of the time). But because I am authetic and speak from my passion, I take risks and achieve results -- in Alexis' world, Jessica's world and family life! As well, I do the same at work -- they are learning my style. Ekk!
Just thought I'd share some random thoughts for a Tuesday.

Tuesday, December 8, 2009

Perkins Fundraising

Our daughters are working hard to do good work for the Perkins community!

Fundraising Email sent from Perkins November 24, 2009

Fundraising Email sent from Perkins December 8, 2009
You can donate directly by clicking to the following website -- http://www.perkins.org/supportperkins/
As a side note, if we had really known these pictures would get so much air-time, we probably would have thought a little more about getting the right hairbows in and fixing Jessica's hair. We might have even tried harder to get Alexis to keep her shoes on, but she is amazing getting her shoes off with only 1 foot, wiggle wiggle wiggle - and "magic! shoe is off!"
Of course none of the subtitles on any of the pictures say, "Family was staying at hotel because Ice Storm caused Tree Branch to Fall caused Electrical Fire in basement caused Water pipe to burst caused Family to flee at 3am". So I guess sometimes what it looks like in pictures maybe just a portion of our "reality"! :-)
Catherine





Monday, December 7, 2009

Photos from this weekend's Christmas parties











HAPPY HOLIDAYS!!!! You can see the kids are in the mood!





Wednesday, November 25, 2009

Traveling the Schnaderbeck Style

So, many people we encountered wondered how we travel with 2 kids. Very smartly.
Some preparations required. Get stuff packed into Matt's Durango in advance. Get all of the "Catherine-decides-at-the-last-minute-can't-live-without-stuff" already packed into Durango. Get kids a warm bath and get daddy some super-caffeinated energy drinks.
7pm Pile into car. Dad drives first. Go through MA, CT, NY, PA.
7:30pm Alexis falls asleep (had swimming at school and no lunch-time nap)
8pm Jessica falls asleep.
10:30pm Jessica going crazy in car seat, has milk snack. She thinks about going back to sleep.
12midnight. First stop at Wilkes Barre, PA. Durango gets gas. Mom runs to restroom. Dad goes to restroom. Both kids awake, so a round of diapers for the wee-pee ones!
2am. Second stop at Newville, PA reststop. Dad runs to restroom (literally, it was raining!). Mom waits until Dad gets back to Durango and then starts driving. Dad SLEEPS. Wee-ones still sleeping.
5am. Third stop in Harrisonburg, VA. Durango needs gas. No restrooms open. Boo hoo for Mom who has been sipping on her caffeine!
6:30am. Dad wakes up, wonders how we're almost at the end of the trip and how we could have made so much time. Realizes how when he looks at the speedometer. Reminds Mom about speed limits and breaking laws. Mom tries to explain her perspective that they are guidelines for minimum speeds. Dad doesn't buy it.
6:45am. Chatter awakens sleepy kids. Start doing raspberries in the back of the car.
7am. Arrive at GRANDMA and GRANDPA's house.
** 12hours door to door. **
8am. Mom exhausted, claims to go to bed for 1hr, sleeps for 2. Needed more.
10:30am. Dad exhausted, almost asleep in living room floor. Goes to bed. Jessica WILD because she is so tired. Fights nap time, finally coaxed with cheetos and extra milk for early lunch.
11:30am. Jessica asleep. Alexis eats lunch.
12:30pm. Dad wakes up.

And thus we returned to our normal schedules..... thankfully it isn't horribly painful.
We'll see how the return 12hour-door-to-door trip goes on Saturday night.

P.S. HAPPY THANKSGIVING!!!!

Friday, November 20, 2009

Turkey Dinner at Perkins

So Wednesday Nov 18th was Turkey Dinner at Alexis' School. See below, Alexis did very well eating Turkey! It is a very very cute Turkey. Too bad his tail feathers had to suffer so much.


And here is Alexis AFTER her turkey dinner. Most folks can relate to sliding down in their chairs, being thankful for the elastic pants and the full belly.

I think most of the readers of the blog are parents of kids with g-tubes, but if you're in the small minority and don't know what that thing is on her belly... that's her g-tube. It's what has gotten Alexis to the point she's at, a direct port into her stomach for her liquid food. We hope eventually she gets the muscle coordination in her mouth to be able to eat and drink, but until then - her g-tube does just fine!
Otherwise, Alexis has been fighting a cold or sinus or something for the past couple of weeks. We went to the doctor tonight (6:30 am departure for school, 8:30-3pm school, 4:20pm return to home, 4:45 arrival at doctors office, 5:45 drop off prescription at pharmacy).
She's asleep now and we hope the medicine will help her fight whatever she has been fighting. At some point when she is fighting an infection she becomes lactose intolerant and that happened yesterday -- so we had to get some resolution.
Hopefully we'll remember to post more as she gets better,
Catherine


















Sunday, November 1, 2009

Other Random Photos





So EVERYONE knows that Alexis wears adorable Pink glasses.
They are her trademark. The brand of glasses is Miraflex and we bought them when she was 1 yr old because:
a) the fit her little face (and lack of real nose bridge)
b) they didn't have screws, they didn't have breakable pieces
c) they were indestructible.

We have loved her glasses but about 1.5 years ago, she had to get new lenses in her glasses and they had to keep her glasses for 2 days. The horrors! Anyway, at that time, the eye clinic recommended that we get a back-up pair (the ones that insurance pays for).

So, the other day for humor, I put on her glasses and took some pictures.

She looks SOOOOOOOOOOOOOO different. I would say in some ways she looks very serious. She looks like she is a librarian or something. Anyway, it's very funny to compare "normal" Alexis to "normal-glasses" Alexis.

Hope you enjoy the pictures, ps. Some people will notice that she is sitting on the countertop. A note to other parents, do not try this at home. Alexis is very well behaved and has never fallen off the counter!

Halloween Pictures

The series of photos as we embarked on Halloween Trick or Treating yesterday. It seems that no one was really thrilled with Trick or Treating..... Jessica definitely got the hang of it and would politely take a piece of candy for her basket and her sister's basket. They were the cutest kids WE saw! Naturally, we have no bias of course!




Happy Halloween!





Monday, October 26, 2009

Charge it for CHARGE!!!


Help us help kids like Alexis smile each and every day!!!

Alexis and our family have been blessed by the extended family of the CHARGE Syndrome Foundation and their online support group.

With your support, the Foundation can continue its publications, funding of research and biennial international conferences. As we know with Alexis, individuals with CHARGE syndrome face many challenges. Here is a picture of Alexis at 4lbs in February 2006. And then a picture of her from last December, doing fabulously!

We are hoping to raise $250 to celebrate Alexis and her CHARGE syndrome friends!

We thank you for your contributions!

http://cifcsecondannual.kintera.org/faf/donorReg/donorPledge.asp?ievent=324400&lis=1&kntae324400=B6A12FB22AC34E7FADE519CF07E3CFC5&supId=274903612

Monday, October 19, 2009


Steve Cahill is this AWESOME dude at Philips who is a TV Director. You all may remember that he filmed Alexis' surgery in April and we shared the video with the "world" in June.
In July, one of my colleagues collapsed returning from the Philips gym. The "Red" phone (which is actually one of those old style heavy big ringer phones) kept ringing. Each person on the Emergency Response team has a Red phone and a pager. On this day, it was ringing and ringing, which is quite concerning.
The story has a great ending, so you won't be disappointed to watch the video. It shows Joe's experience, what he remembers, what happened afterwards, how the Philips Emergency Response Team members jumped into action and how his heart got repaired with 2 catherization procedures.
Joe's story is a warm story about how important the heart is to the body. Joe is truly here today because the best medicine was applied at the best time. Alexis is our little miracle, but Joe is also a miracle!
Here is the video link to Joe's "Shocked Back to Life" video:
http://www.theonlinelearningcenter.com/schtml/joe


And if you missed it before, here is the video link for our dear Alexis:
http://www.theonlinelearningcenter.com/schtml/alexis


P.S. For the curious, there is also an excellent video on the Heart Catherization procedure and how the doctor placed stents in the heart arteries after Joe's heart attack. (GREAT TRAINING MATERIAL FOR US TO BE PREPARED FOR ALEXIS' CATH PROCEDURE)

Thursday, October 15, 2009

EEG Day...

Smiling at the camera, what a Ham!


Curious if Mom got the flash setting right this time....
Busy working at school with her glorious hairdo!


Exploring the orange paint!
Checking out the feathers and look feathers stick to wet paint!

Getting her full costume ready!

Chilling at the hospital to get the hairdo and decorations off (it says Alexis in the letters)!


The end.
As Paul Harvey would have said, "The rest of the story, we will find out in 3 weeks when the Doctors review her EEG". That is most definitely HOSPITAL TIME. ZZZZZZZZZZ.
Hope you enjoy Alexis EEG day as much as she did!

Wednesday, October 14, 2009

Bumps in the Road... Upsetting the Apple Cart?

So, over the past couple of weeks we've had some roller coaster rides. They are minor in the scheme of the big picture -- but we all know that minor bumps along the road can upset the apple cart just as well.
Alexis has numerous doctors, nurses and "followers" of her medical care. We have seen Neurologists throughout her very short life but they have always been "come-and-go" doctors. What I mean here is that they descend on her in the hospital, do some test and then give her a "clean" bill of health. She's had a Neurologist when she was in the NICU in 2006 and in the ICU in 2007.
Over the past year, Alexis' sleep studies have shown SPIKES. Our Sleep Doctor from Children's was quite alerted after he saw two sleep studies showing these SPIKES.
What are spikes? Misfirings of the brain.
Are these concerning? Well, not necessarily. But our sleep doctor is also a Neurologist. To understand what is going on more thoroughly, he 'ordered' an EEG for Alexis (this was a daytime EEG and the leads were on her head for 20mins). The results he saw were spikes all over the brain, a lot of activity and a lot of curiousities to what could be going on. His recommendation was that Alexis should get a 24 hr EEG to watch more closely the brain spikes.
Why the concerns about the spikes? From Alexis' Neurologist/Sleep doctor's experience, he has never seen a kid with these spikes that doesn't have seizures. His direct quote to us, "It's almost a guarantee that Alexis will have seizures based on her abnormal spikes in her brain".
Hence, the bumps in the road. Today Alexis is geared up with her 24-hr EEG to determine if she's already having seizure activity.
In the mix of everything else Alexis has going on, it doesn't really surprise us.... but we had been "safe" (if that's a fair word) from Neurology up until this point in her life. Naturally though it does frighten us as we are anxious that eventually Alexis will catch a break.
So, in short, we've added another specialty to regularly see Alexis every 3 months and challenge us to figure out what is really going on and how it affects her daily life.
We'll keep you all posted on the status of Alexis' EEG results,
Catherine & Matt

Sunday, September 27, 2009

CORN-ucopia of Corn Fun

Last weekend, we visited a farm with a corn-maize. They had a lot of activities for the kids.
here Jessica pretends to ride a little tractor. They also had a big pit of corn kernels for the kids to play in. Jessica liked being buried in the corn.

Of course, the big feature was the corn mazes. They had 3 different mazes (kiddie, easy, and hard). Here is Catherine in the easy maze with Alexis. There were not to many wrong passages and the wrong turns always looped back to the turn point.

Here is Matt and Alexis in the play area. They made animals out of hay bales. In the mazes they had fun games and quizzes to both help you get through the maze and to win prizes. They had alot of CORNY games - where you need to decipher the picture quiz.


After lunch, we ventured into the hard maze - they said the average time to complete was 40 minutes. There were alot of turns and direction choices. Often, Catherine and I would split up to find the CORNundrum games. Below is a part of the maze where Catherine and my paths crossed over/under each other.

After, Catherine took the photo of me and Alexis - you can see the expanse of the maze - the barns in the background is the entrance location. The maze encompassed 12 acres of cornfield.

After finding our way out of the "maize," we took a hayride on a trailer pulled by the farm tractor. We went around the maze, and out to the pumpkin patch. There were alot of 'Great Pumpkins' and a bunch of little ones too.


Here Alexis and Jessica stand by the biggest. They were 30-40 lbs each. There were also alot of small pumpkins that Jessica loved.


It was a very fun time, and we look forward to going back next yearwith friends (and/or family).

Matt, Catherine, Alexis and Jessica

School Beginnings


Jessica started full time at a new daycare center. She was very excited on her first "day of school." She has a new purple backpack to help her carry her things.


Of couse, Daddy still carried most of the stuff. Here is Jessica waving bye-bye to Mom (Mom was coming along - she wouldn't miss the first day!).


And above is Jessica walking in to the daycare center. She has turned into such a big girl. She want to do everyting herself, whether that is walking someplace, eating, etc.

And everyone at the daycare loves her. She is very polite, helps all the other kids, and even gives them all a big hug when it is time to leave for the day. Being with the other kids is helping her to vocalize more. You can hear her trying to repeat what you say.

Matt, Catherine, Alexis and Jessica.

Sunday, September 20, 2009

Please pray for Moriah, Victoria & Justin

Alexis dear friend Moriah has been in the battle of her lifetime, over the past 10months in the hospital. Moriah has the cutest face, the dearest smile, the most wonderful parents and the widest support network. She also has the best doctors and some of the most challenging conditions. Please check out their blog:
http://momentswithmoriah.blogspot.com

Moriah is a sweet dear girl with a lot of spunk and energy, let's pray to get her back that way.
We love Moriah, Victoria and Justin!
Catherine

Wednesday, September 16, 2009

What I do at School (by Alexis)

First things first, I drive myself in, they get me off the bus. I got my driver's license at 3, evidently anyone can drive in MA. It's not required that I can see over the steering wheel. Although, I could go a lot faster if I could reach the pedals.

This is me eating breakfast too bad my mom is so lame at posting pictures that I'm sideways.

On occasion, I get to play with scissors. I'm not really sure why I have scissors and a mouse stuffed animal, but I enjoyed the scissors.


I had to read something to Bridget. She's fabulous, I have this funny look on my face because they were taking my picture.



And the best photo for last, sometimes I just have to take a nap at school. I have an exhausting day, getting up at 6:30am every morning, having a full day of school. Yep, I find a time in my day to just chill. (Again, I don't really sleep sideways, it's just my mom posting the pictures sideways).



Tuesday, September 15, 2009

Alexis on Perkins website

So our superstar Alexis is on the front page of the Perkins website!
It's a great video describing a Communication Portfolio that parents, kids and educators can use to describe the kids and their progress.
The website is: http://www.perkins.org/
You can see a picture of Alexis here-- (she's the small link at the bottom right)





Tuesday, September 8, 2009

Alexis and Jessica

We took pictures last weekend at the condo, the series speaks WORLDS about how expressive Jessica's face is.
I was taking the pictures, which is why they are so lame. Matt was giving Jessica some "coaching", "reminders", "pointers" to stay seated, look forward and not to bother her sister.
You can see the results. She is definitely MY daughter.
Catherine