Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Sunday, December 18, 2011

December 18

What a fun day we had to celebrate Claire and her amazing 2-years-post-transplant! What difference Dec. 18 2009 was in our lives. It has changed every aspect of our day-to-day life for the better. Not that it's been a free ride from there...but it certainly has changed our quality of life and Claire's ability to enjoy being a KID! I've often thought back about what we did for the first two years of Claire's life. Daily dialysis...sometimes up to 15 hours a day almost seems unthinkable! But when you're going through it and there's no other choice, ya just do it! And we did!! But how nice that we're past that phase. Life post transplant has presented different challenges but I feel blessed that Claire has continued to have a positive attitude and the desire to endure through all she goes through. She certainly was well prepared before this life to face the trials she experiences. I believe that with all my heart. She continues to be a shinning example to all who know her of joy, patience, and endurance. How we love this princess and are so grateful for the life-saving transplant she received 2 years ago TODAY! What a miracle.

A moment such as this calls for a celebration! Claire was surprised this morning to see a beautiful butterfly balloon, just for her, attached to a bag of Swedish fish! (yes, those are my hills she's wearing! Doesn't she look so grown UP! AHHH!)


The rest of the party was up to her to plan! We had our annual tea part with the snacks of her choice. This year the menu included water, chocolate pudding, oranges, rollos, and Swedish fish (which ended up being Mabel's favorite...every picture I snapped of the food had her hand in it!)





Then Claire had an egggstra special craft she wanted the family to do: Easter Christmas Eggs! Who'd a-thought?!?! I'm not sure how she came up with such a idea...but it is brilliant! We loved decorating our Easter egg with Christmas decorations and cutting them out. And our names had to be written on the back so we'd always know who's was who's!





To top the night off, we played a little game of Candy Land and a 5-minute game of TAG!

SO fun to have Claire be in charge. She was often found consulting with her side-kick-brother who offered his suggestions LOUD and clear...but it was her special day and she knew it. That's what matters!

So grateful for December 18 and for the life Claire has LIVED each day since!

4 comments:

Cindy said...

Congratulations Claire!!!

g said...

Congratulations to you Claire.

Thanks for being such a sweet, adorable, loving little girl. You have brought many happy moments, hours, days and even years into our lives.

We love you and celebrate life with you.

~adelle said...

Wait just a minute? It has been TWO years since she had her transplant? What in the world? I swear it was just yesterday. Here is to many more good years to come! What a sweetie.

And Mabel is getting so darn cute I want to squeeze her.

Anonymous said...

hooray! I'm just getting caught up on your families adventures recently. What gorgeous kids you have! Mabel is turning out just as beautiful as her sister. So fun!