Photos from this weekend's Christmas parties

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

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!!!!

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

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!

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

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)