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.


Monday, November 2, 2009

Day 49

Today's greatest accomplishment may seem kind of weird and insignificant. But for us, it was a big deal.

Claire has been having blood pressures taken on her legs since she was 2 months old. It took her a while to get used to the squeeze, but now it's no big deal. Every dialysis day she has a minimum of 8 blood pressures taken and she sticks her leg out freely each time. (Except when she's got a little playful, mischievous bug in her--then she makes us have a little fun to get that leg from her!)

Problem: two casts right where those blood pressures have been taken for the past 2 years of her life. In the past, we have tried to get her to take a blood pressure on her arm and she HATES it. I mean really hates it. Cries. Screams. Tenses up. Not pleasant. In fact we have never gotten a blood pressure successfully taken on her arm.

Until today.

When we went to do the first blood pressure of the day, she pointed to one leg, then she pointed to the other. She looked at me and I told her we couldn't do the pressure there this time. The casts were too hard and it just wouldn't work. Within a few seconds, she held out her left arm as if to say, "I get it. I know I won't like this, but here you go."

I tell you, this girl is wise beyond her years. We did every single blood pressure today on her arm without ONE whimper. She wanted to hold my hand each time she did it, but as long as she had mommy's hand and I talked with her about how it going to get tight and then loosen, she was okay.

To me, this is an amazing thing.

8 comments:

Shellie said...

I believe that really IS amazing! Such a precious picture of her holding your hand :)

Mary said...

She is so sweet!!!!

JoAnna said...

Wow. She just touches me to the core. What a spirit!

** Adrian ** said...

That IS amazing!! What a sweetheart. I bet you were worried about it before going to dialysis & then there she goes stepping it up yet again. What a trooper!!

hjn said...

Sweet Sweet baby angel girl! I pray for all of you each night.
May her angels surround her!!!

Unknown said...

It amazes me how she just blows through barriers- like they're not even there. She is one truly inspiring spirit.

sharpfamiy said...

You don't know me but I've been following your blog since I found out about you. I'm on the little committee to put on that benefit concert here in Idaho. Anyway, I have a check for you from my grandma. She doesn't use the computer and can't figure out how to do it online so she just sent me the check. I need your address so I can send it to you. Can you email me with that info and I'll get it out to you.
Thanks for letting me be a part of this. Your children have touched my heart SO much! They are so incredibly special! Anyway, hope to hear from you soon. heather4108@hotmail.com

Wendy Beebe said...

She has angels with her.