1 Month Later :-) .... 8 years later

It's been a month since I have written on Schnaderbeck Blog:

since then I've been at home for Thanksgiving, in Atlanta for work, in Orlando for other work and will go to Troy NY for meetings this week.

December 15 is usually a hard day for me - today it was filled with cookies and  projects around the house -- we got about 8-10" of snow overnight and it seemed like a great day to stay inside.

8 years ago we were having a different kind of night.  Matt took me to Lawrence General, for what we thought would just be dehydration and much needed rest.  Instead, we found out that Kaitlyn had died and I was taken urgently to Tufts-New England Medical Center.  Alexis got lung steroid shots - two doses over 2 days and I was put on bedrest.  Thankfully I was able to stay at home and not have to do bed rest at the hospital.

Alexis "stayed put" and grew to her huge size of 4lbs before she was delivered by c-section 8 weeks later.

I call the time between December 15, 2005 and February 8, 2006 as the wodgy period of my life -- yes, wodgy is not a real word.  It's the only word I came up with for explaining how it feels to carry alive baby Alexis and dead baby Kaitlyn.

Alas spending the past few days with Alexis (she was sick) -- has reminded me how precious she really is and how her health is generally balanced on a sword edge.  

She's made a lot of great progress this year - before she recently got sick, she was eating about 50% of her calories by mouth (purees and thickened liquids).  She's also more social than ever, and clearly indicates her wants and needs very clearly.  She's been so exhausted the past few days, I've gotten some great cuddle naps with her (holding her on my lap and letting her body rest).  Not all almost 8 year olds will tolerate that.

Take care folks - hug your little and big ones tight this evening.  And this season!

Happy November!

I guess we are falling down on the job of keeping regular posts. 

I say "we" but we all know that the we can only be me and my multiple personalities.  

Here's a great photo I took tonight of the girls together:

The official story goes something like this:

Jessica will ask "Can I watch TV?"  I say, "After you read your sister 2 books. Go find 2 books to read to Alexis"  Jessica moves quickly but even more so because there is a fun reward of TV afterwards.

On Facebook, friends have suggested:

I am interrupting their rehearsal. Perhaps they are reading lines of Shakespeare and going over who gets to be Juliet and who will be Romeo this time.

I'm interrupting an interview.  Especially with Alexis' hand in the air like that. So maybe Jessica is taking this opportunity to review key moments in Alexis' life from her perspective.

Thinking about this seriously though, Jessica would be an intense interviewer - she digs deep into the truth of all matters - anyone who has conversed with her knows this.

I'm interrupting sisters reviewing their plans.  It could be plans to get up multiple times in the night, or maybe plans to get up super-early in the morning, or even Christmas plans.  Jessica would totally help Alexis with her Christmas gift list. 

In anyway, they were just cute sitting there seriously working together on a Friday night.  

Happy November!

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”.

Enjoy!

http://www.youtube.com/watch?v=h5fJCaK4gS4

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.

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!!!

Alexis Giggle

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!

Win Lily the LightAide with the LightAide Backpacking Program!

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)
 BEFORE

TREES REMOVED

 FLAT YARD PUT IN

BIG RETAINING WALL

 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 :)

Scottsdale Silly & Phoenix Phun

Here's some photos from our trip to Phoenix / Scottsdale.

These are photos from one morning in Scottsdale Old Town.....

Jessica meets all types of people on the street.

 Watch out Alexis!!!  That Cowboy looks TOUGH!  

Jessica found another friend..... clearly we're surrounded by interesting people to meet! 

Some cacti - and a pose. 

One day, Dad played golf - so what did me and kids do?  We took a social visit to the Phoenix Children's Hospital.  Philips Color Kinetics did the lighting for the building - and it was very exciting to see it first hand.  Here's a video - it's much better than my photography!

Doesn't Jessica look thrilled?

Ah, we'll be posting sometime soon photos from the official CHARGE Conference photographer - Catherine Lacey Dodd.

An abnormal Day-in-the-Life....

Most of my days at work look like this:

Excel, Powerpoint, Email, Excel, Powerpoint, Phone call, Meeting, Demo, Powerpoint

But once, it has looked like this:

Rehearsal, Commute, Hair/Make-up, Last Rehearsal, Microphone check, Live Webcast

Here are some photos to go along with that day:

View from the Zocalo Offices in Chicago: I’m a horrible photographer, but you

see how high above Lake Michigan we are.

 View of the production studio cool lobby light fixture:

 View of the effort to get me camera ready:

View of the set as they were setting up the lights:

View from the other side of the cameras when we started filming

 In case you missed this, here’s the link to the rebroadcast:

https://bitly.com/UniqueSuperpowers

It was great to share my passion and my motivation with a larger audience. I can’t say that I wish my life on anyone – but I do wish that people in the world can find their passion that motivates them.

I did get a funny comment from a great Facebook friend, she said “After seeing the video, I was afraid you weren’t going to be a regular mom”  Thankfully when she saw me for the first time “In Real Life”, she was relieved that I was ‘regular’.  I totally laughed and tried to explain how being ‘camera ready’ is a tremendous hard work for me and that I’d rather spend many days doing:  Excel, Powerpoint, Email, Excel, Powerpoint, Phone call, Meeting, Demo, Powerpoint

So for those who think that that day program is sort of boring, I’ll spare you the play-by-play of those days. 

P.S. My husband is a saint.  When we were prepping for the video – he braved the Chicago Aquarium with both kids and then flew back to Boston with both kids solo! 

(I was in that 3rd white building in from the right from the Lake for my prep meetings)....

Chicago Adventures - "Unlocking Your Superpowers"

Over the weekend, the family and I traveled to Chicago.  Matt and kids were able to sight-see and see some family, while I prepped for video webcast on Tuesday.

Here is the video link - it was live.  It was an interesting experience and I'm still not fully recovered from it (gives me an appreciation for folks who do this frequently).

CLICK HERE to watch: http://bit.ly/UniqueSuperpowers

I've shared with Facebook already, but for those not there.... 

How to Travel? How we keep calm?

Here's a post I just helped write for Wonderbaby website:

http://www.wonderbaby.org/articles/traveling-with-a-medically-complex-child

New Interest for Alexis

On Saturday, we got to celebrate Brady's 6th birthday.  Although I must say Jessica will be turning 6 before Brady. . . . but our dear friend Brady is having surgery on Friday so his family had his birthday party early.

We went Bowling.  In New England, that means Candlepin bowling.  This is somewhat odd to both Matt and me, but Matt had been to a birthday party with Jessica in May - so he got to experience it then.  

Alexis and Jessica are both friends with Brady so we all went.  We knew Jessica would like it, so that was a no brainer.  We weren't sure that Alexis would like it.  We were wrong.  

Here is the video of some of it.  

Alexis Bowling

She actually watched the ball go all the way down the lane and crash into the pins at the end of the lane.  The end of the lane is 60'.  We've always known that Alexis' vision was diagnosed as 20/40 with her glasses, but we had never seen her use her long range vision to clearly watch a moving object so far away from her.  I'm sure she was benefiting from the auditory and tactile input (there were vibrations in the floor when the pins would fall down).  She really enjoyed the whole process!  

Thanks to Brady for having a great Birthday party so that we could find this new 'interest' for Alexis.

History In Methuen Today

Today in Methuen, they had a Civil War Reenactment.  Here's me and Alexis hanging out with President Lincoln.

Then me, Alexis, President Lincoln and Jessica. 

Jessica is staring at Ulysses S. Grant discussing the types of horses used in the War.

Here's Ulysses S. Grant giving his speech.  

I won't say much to comment but for some of you who read this blog - you're aware that I'm from a different side of the Civil War.  So it's definitely interesting to hear about people who traveled away from their homes to defend the United States vs those you actually stayed home to defend their states. 

It was a great historical day - this was set up to recognize the 150th Anniversary of the Gettysburg Address.  

Here's the Link describing today.

Some Post-Graduation Nostalgia

Yes, I realize that Alexis *only* graduated from Preschool.  But *only* to a kid that spent 100 days in the hospital for her first year.... well, we are extremely proud.

I found some photos to do a small compare / contrast:

 First day of life - 4lbs. Tiny (piece of paper for reference & my hand)

 Alexis and Family ~5months old. Wearing 3month old baby clothes.

Alexis super-happy at  Graduation! 

The spotlight on her (a photo when she's not pulling up her dress or taking off her shoes).

Also for those who don't remember, here's an article I wrote for Boston Children's Hospital -- Alexis carries a long list of diagnosis, but thankfully her smile and love of life makes that list disappear when you are with her!  A is for Alexis