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, January 4, 2010

Jan 4 9:00 pm

Everything went really good today. I was thrilled to go to the hospital at 8:00 this morning and get home before 9:00! It was very strange. On the ride home, Claire kept saying, "no hospital day?" Like...what's going on, Mom...aren't we supposed to be there for at least 3 more hours?!?! It was awesome!

We had a fun afternoon because today was Christmas for our family!! Benson put a special candle light in the window last night so Santa would know that our family was ready for Christmas. He couldn't wait to open the presents and see if his 3 wishes came true. The vacuum, pinata, and arrow gun all made it under the tree and he was bouncing off the wall the rest of the night! Claire got the traditional baby set with the highchair, car seat, swing, potty, and stroller. When she saw the box, all she could say was open it open it open it!! She would NOT move onto the next present till it was opened!! It was a great Christmas on a day that was just right for us.

All of Claire's labs looked really good today. Just keep on keepin' on and we'll see you on Wednesday, was the main message. She'll have labs mon/wed/fri of every week unless something changes or needs to be redrawn. Otherwise, we'll plan on blood draws in the a.m. and an appointment with Doctors in the afternoon on each of those days. MUCH easier than 6 days of dialysis!!

Claire's energy and love for life just keeps escalating! Tomorrow will be the first weekday in over a year and a half that Claire and I won't have to step foot in a hospital! We could stay home in our pajamas all day if we wanted! Can't wait to go to sleep....just so I can wake up....and do whatever!!

13 comments:

JoAnna said...

WAHOO!!!!! This is SO EXCITING!!!! I am SO happy for you!

Michelle said...

YAYYYY!!! I really was a special treat to read about Claire's transplant, it truly made my Christmas season. Enjoy hanging out in your jammies--- you've really earned it. Thank you for all the inspiration and re-focus you've given me. You and Jared are truly remarkable people.

Crystal Taylor said...

Hooray! It is so wonderful to hear such good news. What a fun Christmas for you guys.

Unknown said...

Well, Merry Christmas Skinners! Hope you do have a jammie day tomorrow. There are just so many pleasures in life that we take for granted. Love you guys!

bestgrandkidsever said...

I am so enamored by Claire. She just exudes a special spirit that comes right through the computer. I am an adult facing a kidney transplant sometime in the next six months, and Claire's experience gives me courage to forge ahead. I'm sure the positive attitude of her parents makes a huge difference as well. Thank you so much for making the extra effort to blog your experience so we can be a part of this incredible journey.

Adrianne said...

Merry Christmas! I'm so happy Claire is doing so well! I can't wait for you to wakeup and do whatever too. You could do nothing! I love doing nothing! Here's to doing whatever with Claire! Thanks for the updates!

** Adrian ** said...

WELCOME HOME, CLAIRE!! (A few days late!!) I was SOO THRILLED to hear from Grandma Waite on Friday that Claire had been able to come home!!! It's been SO fun seeing the posts since you've been home! I loved the video of her eating ice cream! It made me giggle!! What a sweetheart!! I also loved this Christmas post! It looks like you guys had a wonderful Christmas!!! I'm so happy for your family & am so thankful that you've allowed all of us to peek into your lives & go along with you on your journey!! As always, let me know if there's ANYTHING I can do for you!! Love you tons & I hope you have a VERY Happy New Year!!

** Adrian ** said...

PS...I forgot to say that I hope you have a great FREE day tomorrow!!! I hope it's filled with F U N !! ;-D

Megan said...

Benson wanted a vacuum? It's definately my favorite chore.

~adelle said...

ENJOY YOUR DAY. I am so happy for you guys.

2sisters said...

I hope you are having a great "free" day, you probably will feel like there is someplace you are supposed to be all day. LOL! Give that beautiful girl and charming boy a lot of hugs from all their friends in blogland.
teri

dawnkp said...

So Happy to hear ALL of your good news. Halle got the same baby set for Christmas. She loves it. I wish we lived by each other so they could play when Claire is all better!

Megan Hawks said...

I am sooo glad things are going so well for you all! You are constantly in my thoughts and prayers and the boys prayers as well. Hope it keeps going this smoothly. Love you all