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.


Wednesday, July 24, 2013

another week

Oh boy, how fast the days go by!  And there's still so much to do!

Lots to figure out with a new place to live.  Some days I'm sure I've spent more time on the phone trying to figure everything out {dance/football/piano classes, Benson's school & medical needs, etc} than I have unpacking boxes!!  So much to do and get together.  It has been a bit stressful for me especially as I get things medically figured out for Claire and Benson.  It's no small task trying to get new insurance set up, approvals for her meds, dr. apts, and actually get the meds TO US before the last dose runs out!!  If we get the last two meds tomorrow and blood work drawn as planned, then I think at least the initial pain of getting this first round going will be behind us.  That will be nice.  

We went to the park and played all morning long last week.  It was park day with some friends from our church and we were the first ones there and the last ones to leave...thanks to our packed picnic lunch and my park-deprived, friend-deprived kids!!  They were happy to have some friends to play with and some swings to swing on!  The kids have loved living right at the beginning of a "dead-end" as they call it, culd-a-sac as the rest of us term it.  They like riding their scooters and bikes round and round.

Fun news is that we're headed out for another long road trip to California on Friday.  Even better...we get to go to Disney Land!  Even best{er} news...we get to do it with family!  The kids can't wait!  But to be honest we're all pretty excited.  Although I do always hold my breath just a bit while were away on vacations like this...hoping and praying no medical needs arise for my kids.  But with lots of water = happy kidneys, lots of prayers = happy hearts, and lots of fun = happy kids and parents.....it should be a fantastic trip!!

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