New Awesome Perkins Video about Charge Syndrome

Perkins (Alexis' school) just released an AWESOME video series (6 brief videos, ~20mins total).
http://www.perkins.org/whatsnew/charge-webcast.html

The video talks about CHARGE, the medical issues for the kids, the educational issues, and tons of other things! And BEST EVER is Alexis' school psychologist is the STAR of the show. Pam Ryan is one of the main reasons us parents stay sane, mostly because she can offer us support, love and guidance as we as parents go through the education system with our dear children. She's an angel here on earth for us and we love "having to go to Perkins to see her" (we do see Alexis at Perkins as well).

Technically, Alexis doesn't have the genetic diagnosis of CHARGE, but we have adopted the diagnosis because (a) Alexis has a lot of the similar characteristics, (b) medical professionals do recognize "CHARGE" as a diagnosis and it helps starting the conversation, (c) the parent support group (via email) is absolutely spectacular and very helpful with advice and support on all topics (even recipes for things to make for our learning-to-eat-children)

So, enjoy the awesome video!!
Catherine

all in a day..... before 2:15pm

accomplished before 2:15pm
alexis awake, dressed, ready to go; jessica awake; catherine showered and dressed ready to go all by 7:15am
catherine and alexis to catherine's 7:30am dentist appt
catherine and alexis to boston for 10:15 eye doctor
catherine and alexis do blood and urine samples before 10:15am eye doctor appt
catherine and alexis sit in waiting room of eye doctor until 11:30am for 10:15am appointment
catherine and alexis get bored and go pick up sleep study results from doctor on a different floor of childrens
catherine and alexis finally get seen by eye doctor and leave hospital at 12:20pm, in time for "longwood-hospital-area" boston lunch traffic
catherine and now SLEEPING alexis arrive at Perkins for school
catherine leaves sleeping Alexis in car to deliver Alexis' car seat to school so bus will have carseat
catherine drives sleeping alexis to lunch/cottage so that she can be woken up by rain drops on her head
catherine drops off grumpy-suddenly-awoken alexis and stuffs for school
catherine leaves and encounters stupid boston drivers on the hazardous roads, takes 1.5 hours to drive a normal 45 min drive
catherine arrives at work at 2:15pm

What I did on Summer Break by Alexis Schnaderbeck (as dictated to Dad)

During my summer break, Mom and Dad took me and my sister, Jessica, to Acadia National Park. My friends at school may not know this, but I was very happy to get an Access Pass from the National Park Service. I was able to get the family into the park and also get us discounts on various things within the park. When we arrived on Saturday, the weather was great, so we drove to the top of Cadillac Mountain (in our Dodge). I had great views of the islands, and loved the wind in my face.
Sunday was rainy all day! Boooo! We did a driving tour of the island. We stopped to see a lighthouse. Although I was getting wet, I thought it was really great.

Monday, the rain stopped, so we got out for a hike. Jessica and I rode our horses (aka Mom and Dad) around Great Head. During the two mile hike, we had great views of the ocean.

This was a nice picture, but Mom got her hand in the way trying to get my attention. I was busy playing with my shoelaces….

After our hike, we drove over to see Thunder Hole. I didn’t hear any thunder. I guess the seas were too calm. Maybe next time…

Here is a picture of me and Dad by Otter Point. The views were nice, but we did not see any otters. After that we went to Jordan Lake for Lunch. I ate an entire container of apple sauce (hiking makes me hungry!).

After lunch, we strolled along the carriage roads. We saw a really old bridge. I think this was the oldest, and was built in 1917.

Tuesday was our last day in the park. I think Mom and Dad went overboard. They took us on a 4.5 mile hike. We saw another stone bridge, and were really high above a series of rapids.

Jessica didn’t care too much about the rapids or the neat stone bridges. She was too busy eating blueberry pancakes!

Why I love Philips!

So, many of you know that I took a new job with Philips Healthcare. Because of Alexis' experiences, I felt I needed to do something that could help other kids like Alexis. I love my job, I love my company, and I love the opportunity offered to share Alexis' experiences with my friends, family and coworkers.

During Alexis' April surgery, Steve Cahill followed us around at Children's Hospital. Steve is an awesome videographer here at Philips Healthcare.

He compiled this 5min video about Alexis, her experiences, my new job and why I feel so strongly to work for Philips.

I hope you all will enjoy it:
http://theonlinelearningcenter.com/schtml/alexis/
Naturally we love it because it's SUPER-GIRL ALEXIS!!! Please leave me a comment and let me know what you think.

More information about Steve Cahill: http://www.stevecahillphotography.com
More information about Children's Hospital: http://www.childrenshospital.org/
More information about Philips: http://www.philips.com/

THANK YOU ALL FOR TUNING IN!!!
Catherine, Matt, Alexis & Jessica

Alexis Swinging with Daddy

Jessica on Slide by Herself (BIG GIRL)

Videos from Memorial Day