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, December 22, 2010

...wonderful



Today was a good day.

Good news all around.

Claire is doing amazing. She had her annual transplant evaluations/tests/urine collections/blood work the past two weeks and today we met with her doctor to get all the results. Her kidney function couldn't be better and oxalate is coming out of her body very well. Liver function looks perfect too. Claire's Dr. was very pleased with how well Claire is doing in every aspect of her health! Things couldn't be better. Well, I suppose Claire's eating could be better...but we're all being patient with that. She's making progress, very slowly.

And Mabel. Miss Mabel Sue. We got the results from her genetic testing today as well. And the news we've all be waiting for is WONDERFUL!

She is a carrier of the disease, but NOT affected by it. So she's like me. A carrier of the gene...but not affected by the disease as Benson and Clarie both are. So if she happened to marry someone who was also a carrier, their children could have PH...but otherwise, she's home free!! All that said, our doctor is sure to mention that she doesn't like to take the results of one study and assume it is 100% conclusive/correct. If two tests confirm the same result, then we can rest assured that all is well. So the second test we will do to help confirm the first will be a number of urine collections. We will do one when Mabel is 2 months old, and then periodically after that. BUT the initial results are promising, positive, and exactly what we hoped and prayed for!!

What a blessing.

What a peaceful way to end this year FULL of blessings and miracles in our lives!

15 comments:

~adelle said...

Well that just made my Christmas. I couldn't ask for a better gift. Thank you for sharing. What a blessing all around!

Anonymous said...

Glad to hear Claire is doing so well and that Mabel is only a carrier. Congratulations!

Tricia said...

Yea, Yea, Yea, Yea! That is all I can think to say! Yea!

Angie said...

Oh Natalie! My heart is just so happy for you! My eyes just welled up with tears hearing the good news! Merry Christmas! What a wonderful perfect present!

Brian and Stacy said...

That is such wonderful news! Brian and I have been waiting to hear how Mabel's tests went. Such good news!! Merry Christmas!!

Tasha said...

Hooray for Mabel!

Mary said...

We are so happy for all of you! Have the best Christmas ever...you guys deserve it!!!

Terry and Diana said...

We are so grateful for the news. We both just cried with joy.

See you soon.

Stephanie said...

That is such great news! Congratulations!!

Merry Christmas

** Adrian ** said...

OH! That is the best news EVER!! What a happy day!!

Love you guys!!!

eclaires said...

What great news! Merry Christmas!

John & Shauna said...

Ahhh. I have been watching your blog to hear. So happy for you guys. She is a doll!

Rebecca said...

That is the best news ever!! I'm so happy for you guys! What a wonderful Christmas present :) Love you guys! and Yay for Claire with her transplants.

Josh and Krystal said...

That is great news! I am so happy for you guys. Merry belated Christmas and Happy New Year! 2011 is going to be great!

Anonymous said...

Miracles happen today too!