February 9, 2015

HB 94: Utah "Right To Try" Act

HB 94 is Utah's "Right to Try" Act.  Right to Try allows terminally ill patients access to investigational medications and devices that have completed FDA phase one safety testing.

We are extremely grateful to Jonathan Johnson, Rep. Gage Froerer, the Goldwater Institute, and fellow rare advocates Jen and Stan Summers for helping to get this important piece of legislation to the floor.  

Many thanks to Jen (Talan's mom) for the photos!

February 5, 2015


I fell off the blog post wagon because THIS happened last week.

Kids are sick, Matt is out-of-town, but life is busy and beautiful.

PS-If you live in Utah, you better register for Rare Disease Day!

January 24, 2015

Sundance Stephanie

We were lucky enough to meet Stephanie D Fischer this week for Sundance!

We call her the "kid whisperer" because she charmed all 3 of the kiddos--the adults too. :)

Next time, Steph, you should just stay with us!

State of the Dubby Update:
Baby WJ turned 7 months on Monday. He can finally sign "more" and "milk".

January 16, 2015

Winston's 6th Month

Oh, sweet Winston.  Darling "Dubby".  My Little Prince.
I can't believe it's been over half a year since you entered our lives.
You are a joy in every dimension!

Strangers call you the "perfect Gerber baby"--and you really are.
Even teething (you have two!) or fighting a small cold, you are always content and smiling.
And you are always, ALWAYS on the move.

Last month you started crawling.  
This month you started climbing stairs and cruising.
You are feeding yourself with a *gasp* pincer grasp!  
(Sweet potato puffs are your favorite.)

What will next month bring?  Every day you change so much!
Your father and I marvel at everything you do and the little person you are.

We take nothing for granted.  
You're a gift.

Eventually, Victoria will come around to realizing that too.  ;)

While I wish I had taken more photos (like I did with Bertrand and even Victoria), I don't regret spending that time snuggling you instead.  :)

Mama loves you more than there are stars in the sky, little angel.

January 8, 2015

The only thing sexier than a minivan...

Our new mobility van: a 2015 Toyota Sienna with VMI in-floor, slide-out ramp conversion.
Bertrand is convinced that all the girls will love it.  ;)

January 1, 2015

Happy New Year 2015!

We wish everyone a joyful new year!

Resolution #1: Blog at least once a week.  Baby steps!

December 17, 2014

Bertrand turns 7!

Things have been a little hectic with the arrival of number three -- so hectic in fact -- that it's taken us a week to post on Bertrand's amazing 7th birthday!

Courtesy of the amazing Szajnuk family, Bertrand spent his 7th birthday meeting the Utah Jazz players!

We arrived for the pregame warm-up, and Bertrand got to sit on the court:

The players came over one by one to wish him Happy Birthday, sign his basketball and take a photo with him!

The Jazz then went on to beat the Spurs in honor of Bertrand's 7th birthday!

Bertrand and Victoria had a total blast cheering on the team to victory!

What an amazing 7th birthday!!!