We leave in two short days for sunny California to attend the Cystinosis Research Foundation family conference.  I’ve anxiously awaited this weekend pretty much since last year’s conference ended!  It was an incredible event that helped introduce us to our new world in a positive and hopeful manner.  I can’t wait to see what’s in store for us this year!

We fly out early Thursday morning along with both sets of parents.  Ben’s brother, Scott, and Amber will be meeting us there too!  I’m thrilled for our families to meet our Cystinosis family.  I have no doubt it will be a moving and emotional weekend for everyone!  There will be lots of fun too.  Stella is excited to meet other kids with Cystinosis and their brothers and sisters without.  I think it will be as meaningful to her as it will be for Haddie!

The conference begins Friday morning and ends Saturday afternoon.  We’ll close out the weekend at the Natalie’s Wish fundraising event.  All the Cystinosis families are welcome to attend an amazing evening of great food, incredibly generous donors and awesome entertainment.  Last year, nearly 2 million dollars were raised for Cystinosis research at the dinner.  I hope they raise even more this year!  Taylor Hicks (American Idol winner) is our entertainment this year.  Apparently he is interested in our cause and is looking forward to meeting the families.  I’m looking forward to meeting Mr. Soul Patrol myself!

The following morning we say goodbye to my parents and Amber while Ben’s parents and Scott join us for three days at Disneyland!  Our whole family is excited for our Disney adventure.  The girls have been talking non-stop about everyone they will meet at Disneyland and all the things they want to do.  Ever since we decided we were taking this vacation, the girls have been saving money in their piggy banks.  We told them once it was time to go on vacation, we’d take their piggy banks to the Coinstar machine at Fred Meyer and turn their coins into dollars.  We said they could spend all the money from their piggy banks on whatever they want at Disneyland. I was surprised and amused when they ended up with a total of $120 combined from their banks.  This is mostly because grandma and grandpa knew of the plan and generously helped by giving the girls a ton of change…and some cash!  They each have $60 to spend on crap stuff I’m sure they can’t live without.  The top of the list for both of the girls (thanks to me) is a pair of Minnie Mouse ears.  Every kid needs a pair of those on their first trip to meet Mickey!  They also plan on getting autograph books for all the characters to sign.  They especially want to get the signatures of all the princesses they are going to meet at the princess breakfast we’re attending on our last morning.

This is the first time we’ll be away from home for a full week since Hadley was diagnosed with Cystinosis.  This means packing takes on a whole new meaning.  Packing for a family of four is a pain in the ass no matter what but when you add the addition of packing for someone with medical needs, it’s a bit overwhelming.  Just packing enough meds for a full week is a task let alone everything else.  Luckily it’s worth all the lists I’ve made and the vast amount of time it has taken.  We look like we’re going somewhere for a month!

I know I will have a lot of wonderful stories and pictures to share upon our return!!