Monday, September 23, 2013

Cool - brief video of my time in DC last week....

I was invited to Washington DC to participate as a panelist to discuss patient engagement in App testing during the ONC’s Blue Button challenge.  It was thrilling to share (briefly) Alexis’ story and our journey – and it is truly important for me to share with others Alexis’ experience so that they are inspired to create new Apps and technology that help us care for Alexis better.  I said on stage “I have been Alexis’ blue button for the past 7 years and it’s truly exhausting” – I’ve been the person aggregating Alexis’ information and sharing it.  I’ve been the one to keep the latest information on her medical conditions and bring it up with doctors who might need to know that information.  It’s a ‘weighty’ job to be the glue for 45+ people on Alexis’ “team”.


Thursday, September 19, 2013

Alexis in chair

I had to pick up Alexis on Tuesday for a different event - so I got to see her doing PT.  Here is a fabulous fabulous fabulous video of her progress.  She was being a "ham" because I was there with my cell phone filming.  Silly girl.  Lots of giggles and very proud of herself.

Friday, September 13, 2013

Somedays, Delirium Sets In....

After 1 full week of school, Alexis sometimes enjoys finding her bed on Friday nights.

Here she is with her giggle-festival.  I don't usually have the camera charged and ready to go - but thankfully I could capture her giddy-self.

Hope you enjoy it.  Definitely worth it for a pick-me-up!!!

Monday, September 9, 2013

LightAide - Backpacking Event Launched on WonderBaby!!

For friends and family, you know I work for Philips.  I went to work for Philips because of Alexis' medical experiences.  I wanted to help more kids like Alexis, I talk about that here: Alexis Video

A brief trip down memory lane:
In September 2009, I participated in a Training Seminar in Philips Color Kinetics Showroom.  
In August 2010, Alexis and I had a meeting with the General Manager of Philips CK and toured the Showroom.  We launched an unofficial project - to build prototypes and see if kids could learn from light.
In April 2011, Philips CK and I went to Perkins to capture the kids' expressions first hand: Perkins Video
In September 2011, I asked the Philips Healthcare CEO to help make the project an official project - he did!  
In November 2012, I started working on it full time and we are excited to be starting to spread the word about LightAide.
In April 2013, we started final testing with the Beta Prototypes and got a lot of great feedback.  We've been working all summer to get the best product we can release to the market -- available to kids like Alexis.  

I'm so very proud that Philips sponsored this project and I hope we can show that helping 'niche' needs like kids with visual impairments can help motivate kids to have more independence (crawling, walking, seeing, being!!)  Wouldn't that be so awesome!

First the first order of business officially is to help get families who want to use LightAide to participate in a contest to win a device!

Friday, September 6, 2013

Random Fun Summer Photos

Alexis goes to a lot of doctor appointments and sometimes 
it's just easier to sit back and let Jessica drive her there.  
You don't think the Highway Patrol is going to pull someone over 
for not being able to see over the windshield? 
Feel like they may have stolen Mr Magoo's car.

And here, Jessica getting her hair trimmed - but she thought the funny hairdo was worth a photo!

I have more pictures from Storyland over Labor Day Weekend - I'll probably remember to post them in October.  

"Backyardigans" - the Summer Project

When we moved into the house 3 years ago, we had a small desire to create a place in the backyard for the kids to play.
Well, now they have one.... my mom has been begging me to post these photos!!!
I've included 'before' photos and 'during' photos and then 'finished' photos.  

(photos through screen windows always turn out well)




 WALK WAY to other yard

 Jessica politely staying off new grass.....
Hopefully I can share more photos.  We welcome any suggestions for hearty easy to maintain flowering plants for the "dirt" bed on the second tier.  I kill plants, so it must be self-maintenance plants :)