Online Journal

Family Update

I am very excited to have this new online journal.  I feel I will be much more apt to write as I am more frequently at the computer than I am sitting at a desk with the paper and pen. Even if it's just for a few quick sentences I am making it a goal to write in my journal every day. I hope to build character in accomplishing this goal.

Character--doing what you say you're going to do! 

This has been a great year so far I can't believe how blessed I am to have two beautiful children and a wonderful loving companion.

We have been through a lot since November 14 when we found out our sweet little Claire had a kidney failure. I took Claire in for a two month check up and everything looks just great. Except that she had a game as much weight as I would've expected. She only weighed 6 lbs. 13 oz. at two months old. So, just as a precaution, the doctor ordered some bloodwork to be done. The next afternoon we were called and told to go to the hospital immediately. After six weeks in the hospital, three blood transfusions, two surgeries, and a lot of unanswered questions, we finally found she had a rare genetic disorder (1/1,000,000).  This disorder begins in the liver – which is not producing a certain enzyme to get rid of oxalate. This oxalate then "spilled over "into the kidneys and crystallize them… Leaving her kidneys with less than 10% functioning. Eventually, the curable result in a combined kidney and liver transplant. Until that time, she is on peritoneal dialysis that we are able to perform here at home. She goes on dialysis for 10 hours each night and her system gets cleaned out from the waist the kidneys aren't filtering. It is a beautiful marvelous invention of technology that we are extremely grateful for. Without it, our little one wouldn't be here today. How grateful we are for our pediatricians insight to Claire's situation.

We also just found out about a month ago that little Benson boy most likely has the same genetic disorder. He hasn't progressed to the same level Claire is at. Claire may actually be the youngest child ever to be at this stage at two months of age. It is more common to show up closer to 2 to 4 years of age. Benson's kidneys are still functioning almost normal. We are hoping will be able to salvage the kidneys and just do a liver transplant, since that is where the real problem lies. We are still waiting for some genetic studies to get back to decide where to go from here for both of our kids.

This year does put a different perspective about having a large family Jared and I had planned on. We haven't made any decisions about future children yet. We're just taking one day at a time and so grateful for the beautiful children we have now. It's supposed to be one out of four chance that your child will have the disease, but we're already two for two!

One thing I am struggling with as we are trying to get into a "new normal "lifestyle, is taking time for myself each day. I do believe this journal will help me in this area. I need time to relax, I think, meditate, and put my thoughts to paper.  Journal keeping can be very therapeutic and I look forward to the time for me it will provide.