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.


Friday, December 7, 2012

December

Well, my camera's out of order again....which makes me feel a bit out of the blogging "order!"  Life is so great.  December is such a fun month.  And I feel like I'm prepared for it this month.  Not that I still don't have a ton of things to do...but I'm just ready for the holiday season to be here and am so excited about it!!  A few randoms to catch up on:

*  Letting Claire and Mabel paint their own finger and toe nails (and then taking it off and painting each other's nails....and then taking that off and painting their own again....and mine....and the floor.....and then spilling the nail polish remover all over the floor)......is a huge tutorial on patience.  Wow.  Did they ever think it was fun....the coolest thing ever.  And then there was me.  I was on the verge of pulling my hair out and saying "we are never doing this again!!"  But when I saw how much fun they truly had and how much they've talked about it since then...I'm sure we will.  Just not toooooo soon.

*  Hospital visits are always a good lesson for patience.  Last Thursday Claire, Mabel and I spent the entire morning at Mayo doing blood work, starting a 24-hr urine collection...and other random stuff.  It took a long time.  So glad to have a home to go to to after long mornings like that.

*  Claire was supposed to have a biopsy on her liver on Wednesday, but after the doctor saw her labs and other test results, he decided it wasn't needed.  Yes!  We were all super excited about avoiding that...and super excited to hear Claire is doing well enough NOT to need it at this time.

*  Today Claire and I were at Mayo at 7:05 am for a 3 hr. kidney/urine test.  I was happy to have the test early so we could be first, get it done, and get home.  Unfortunately, we sat in the waiting room for 45 minutes till they called us back.  Ugh.  Wish I had slept (and let both my girlies sleep) in our beds for 45 extra minutes instead.  Oh well.  I've just come to accept that that's just how it goes sometimes...and ya just go with it!  Claire had an ultrasound of her kidney and liver after her test this morning and those take a while...just cuz there's lots to see and take 'pictures' of in there.  But Claire was a champion.  It's so much easier to do these kind of things now that she's older and has more self-control and understanding of what needs to be done.  She and I were both ready to be done and home again. How lucky were we to come home to our wonderful daddy who had lunch hot and ready for us.  Wow.  That meant a lot!  She got a $1 store reward for her endurance (even fasting the entire time)....and I got a hot lunch.  Awesome.  ((December is Claire's transplant anniversary.  That's the reason for all the extra hospital visits lately.  We'll be meeting with her kidney and liver doctors next week to get the nitty gritty info on how Claire is doing.))

Here's a few random picts of the girls at Mayo.  Killing time.  Making memories.





*  Christmas excitement is in full swing here.  Every day we've been doing three simple things:  doing one simple Christmas activity, reading a one minute Christmas story, and a simple scripture.  It's been so fun.  This year I'm finally organized enough (thanks to a great friend) to have this kind of stuff put together and ready for a fun month full of memories.  I think this is the first time I've been finished Christmas shopping this early too!  That feels good.  Still have projects I'm working on for Christmas surprises, but other than that...bring on the fun!!

1 comment:

grandpa Terry and Diana said...

Congratulations to Claire on her 3 year transplant anniversary.

It is good that she is good well.

We are all very happy and blessed that she is doing well.

Glad to know that Christmas is coming along.

It seems to go just fast for me.