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, January 4, 2012

Wednesday

Wow. It's amazing how quickly I forgot how exhausting taking care of everything by myself can be!! I got waaaaaaaay too used to the extra helping hands and the relaxing, lazy days. These past two days have just kicked me in the rear! I'm exhausted! Good thing the weekend's almost here.

Good news about Claire--well potential good news. Tomorrow she'll go in to have her bile duct stretched again. Last time they got it dilated to 8 mm. If the bile duct has stayed at the 8 mm and not contracted down, they will remove the tube and call it good. Wow. Who knew?! I just found out today. BUT if it has contracted down, they will dilate it again and leave the tube in for another month...and then check it again. SOOOOO at least there's some light at the end of this tunnel/tube. Claire can't wait to get it out so she can go swimming. Let's hope that won't be too far in the distant future!

Bad news about Claire--well potential bad news. She has the UTI which they are treating with oral antibiotics for 10 days. BUT she also has two viruses that they detected in her urine, BK and CMV. I don't really know a lot about either of them....but the good news is that neither are detected in the blood (yet). Not sure what treatment there is for them or what they will do....but it is another issue yet to deal with.

More good news about Claire--SHE'S HAPPY and as far as she's concerned...a healthy, normal, playful 4-year old! Amazing, isn't it?!

Off to bed early tonight. Early wake up tomorrow with a 6:45 am blood work for Claire.

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