And the oxalate number is...

70.8.  The words that came to my mind are, "but if not." One thing I do know about Claire is that Heavenly Father is very aware of her. I have complete faith in that. He knows what her needs are and what the needs of our family are. If it is not his well to have her oxalate at a level where we can keep doing dialysis at home, then I will obey. We will do whatever it takes to keep our baby girl safe. If that means going to the hospital three times a week for dialysis then I will do it gratefully. We will see what the doctors have to say next week and go from there.  

We just got back from our Waite family reunion in Zion National Park. Grandma Waite provided everything for each of her descendants: food lodging and a fabulous time!! We hadn't seen many of our family members for over a year, so it was great to be able to be with them and renew those relationships. What a sweet, loving Grandma we have! You know, whenever I am tempted to compromise some thing, just a little things, or not complete some thing as fully as I am able to, I just asked myself if that is what grandma Waite would do.  Undoubtedly, the answer is no. And I go and do the thing right away and at the right time and in the way I know Grandma Waite would do them. She is such a great example to me of diligence, love, hard work, and as close to perfection as I know! I love her and I'm grateful to be named after her. How blessed I am to be her granddaughter. I love spending time with her this past weekend!

Hoff (Aleena) came home with us after we spent some time in St. George with Dad and Diana. She needed a change up from her normal life in Ogden and I always love the company and help that anyone is willing to offer! Hoff is always such a joy to have around. I hope I will have the eyes to see her sweet Christlike example as we spend time together the next few weeks.

Final Chance

I took Claire into the Kidney center today and it was a great visit. Long…from 1:00- 4:30...but good. Mary, Claire's nurse, taught me how to do the daytime exchanges that we will need to do twice a day from now on. The plan is to do 12 hours of nighttime peritoneal dialysis, from 8:00 am till 8:00 pm. Then do a peritoneal dialysis exchange during the day at noon and another one at 4:00 pm. The exchanges are simply a mini dialysis where I hook Claire up to the dialysis machine and it fills her peritoneum up with a sugar solution. An exchange is made where toxins are taken out and replaced with this solution.  Then I am able to disconnect her and do whatever, wherever. Four hours later I hook her up again and drain it out and fill her up again. Then I am able to unhook her until the nighttime dialysis begins at 8:00. Before her nighttime treatment, it will drain her again and then start the normal 12 hour dialysis. The theory is that the more times she is on dialysis, the more oxalate that will be removed from her body. So in every way, we are optimizing her dialysis... With the fill volume, the last fill volume, and the overall dialysis time. Through faith, fasting, and prayers, Claire's oxalate level will lower, if it be God's will for Claire and our family.

JoAnn's Compliment

Today we went to Joann's craft store to buy some materials to make Claire and Benson a special memory board. While at the store, there was a lady whom I have chosen to call Joann since I don't know her real name who was particularly interested in our children. She was at the counter when we were getting our fabric cut and was smiling at Benson and Claire. Joann said, "What beautiful children you have!  She is just beautiful and he is so precious."  We thanked her and she just kept admiring and smiling at both the kids. It just so happened that when we were done with our shopping, she was behind us in line to purchase our things. She was smiling and talking with Jared as he was holding Claire and she said, "You two are truly lucky… Or should I stay blessed. You are very blessed to have these children. They are very beautiful… There's just something special about them. They are perfect."  Joann just smiled at our little ones. Little did she know how special our little children truly are!  Joann reminded me that it's not just Jared and I and close family who see something special in our little ones. Others can see it too. There is truly something special about our two beautiful children and anyone who knows Claire and Benson is blessed to be a part of it.

Eye Doctor - Round 2

Well, I took Claire to the retina specialist at the University of Colorado eye center. Dr. Mandeva was a specialist that looked at Claire and the news he had to give us similar to that of Dr. Curtis from the Childrens Hospital. He definitely saw crystals in the back of Claire's eyes on the retina. He was very caring and concerned about Claire's condition. It's so hard to tell in a baby how well she can really see, but he believes she already has significant vision loss. He said if he was looking into Claire's eyes and she could tell him how well she could see, she would probably say she could see about 8 feet in front of her and could possibly read with magnification. Now that was just his guess and who really knows if Claire can see much better or much worse than that currently. Now just because he says that doesn't mean I agree. I honestly don't have any concerns with Claire's vision right now. She seems to see very very well. She can see a cheerio on the ground and also seems to see quite good distance as well. I pray that heavenly father will protect and pick preserve Claire's vision. Dr. Mandeva also said that over time, her vision will only get worse, so as long as the oxalate stays in her body. And right now, the dialysis and the B6 vitamin are the only things that will get the oxalate out, other than a transplant. We will increase Claire's peritoneal dialysis to 14 hours at night and also do some daytime dialysis exchanges to ensure we are doing all we can to preserve Claire's health. Miracle girl…perfect eyes!  

Nursing

 Sweet Claire is 9 1/2 months old and she has decided she has done nursing. Rebecca Allen and her two boys were here to visit two weeks ago and although we had a great time, they brought with them colds. The day they left, both Benson and Claire got a cold and that's what triggered this whole thing. Claire didn't nurse very well that week that she had a cold and now that she's over it, I guess she just decided she's OK with keeping it that way. I'm really fine with that, but I just want to make sure she still gets food through her mouth some how, and not only through her tube. Her G-tube is super convenient, but she is not going to be a strictly to bed baby. She needs to know that nourishment comes to the mouth! And the whole problem with that is that she doesn't take a bottle. So we've been working with her on a sippy cup these past few weeks and she'll take about an ounce through that. She's also liking to drink from a regular cup and will take about an ounce through that too. Definitely more work than nursing is, but worth the work in the long run. I have to realize that she is an individual too with likes and preferences. I need to follow her cues just as I hope she'll learn to follow mine! Here we go through just another one of the many transitions in the life of my sweet little baby girl! 

12 lbs. 8 oz. 9 1/2 months old.

Eye Doctor

I took Claire in to see Dr. Curtis at the Childrens Hospital I clinic and didn't get the greatest news. After we got Claire's eyes dilated, he came in and was looking at her eyes through those funny looking glasses and lenses they use. He then began saying things like "ooooohhhh, wow, oh yeah there's definitely crystals in there, wow, that's unusual, let me go get another doctor and have him take a look at this."  Not the most comforting thing a mother wants to hear as the doctor looks into the eyes of her beautiful nine month old. Nonetheless it is what it is. And I'd rather know about it now and then have it be a surprise when we didn't know about it and she ends up with vision loss. As far as we can all tell, right now Claire sees very well. I have no concerns about her current vision. However the doctor is simply concerned that overtime she may develop some severe vision loss if those Crystal stay in her eyes.

We don't know a whole lot more right now. I'm taking Claire to a retina specialist at the University of Colorado on Monday the 30th to see what his opinion is. We will see if there's any testing or treatment that can be done until the kidney doctors feel Claire is big enough for a transplant. Ultimately, the kidney liver transplant is the only thing that will 100% care of the oxalate problem in her eyes, and the eye doctors opinion was to not delay the transplant at all. But Claire is still just over 12 pounds and needs to get bigger for her to have room to put the organs inside her.

We haven't got the kidney doctor's take on all of this eye stuff yet, but we'll be going back there the second week in July. But will they know what's best either? Oh I hope I can be blessed with mothers intuition to know what is best for my sweet little one!

Every night as I hold Claire before I put her in her crib I talk to her body. I thank her body for getting the oxalate out and for not causing any harm to her eyes. She will see well. She will. I thank her body for growing so big healthy and strong. I thank her body for having the dialysis work so efficiently and cleansing her body. Thank you.

Genetic Studies

Well, we finally got word on the long-awaited genetic studies.

They indeed found the missing gene in Claire that is causing this defect in her body and unfortunately they found the same missing gene in Benson. Our sweet Benson boy has the same thing. But how grateful we are to know and begin to be proactive about it.

As of now, Benson's kidneys are still functioning normal. In fact, the average age for people with this condition to get kitty failure is around 30 years old. Claire is the youngest person ever to have kidney failure from this condition. Before her, it was six months old. The oldest person ever was 70. Can you tell your is the first sign of trouble. So Benson could be fine for another 30 or so years! Or it could happen tomorrow. There's no rhyme or reason why it happens when it does. So instead of putting him through a transplant right now, when he could be fine for a long time, we're just going to keep testing his kidneys every three months or so. As soon as they start to show signs of failure, then will look into doing the liver transplant and still try to save his kidneys. So I guess we'll just have to live on the edge of our seats for the rest of our lives, never knowing when it might happen!! Ha ha ha! Funny, but basically true! He's taking the same B6 vitamin to help get the oxalate out of his body, just as Claire is. He does have a slightly elevated oxalate level, around 9. Normal in you and I is below 2. So that shows that something is beginning, but not progressing at the elevate rate Claire's is.

The plan with Claire is still the same. Try to get her as big as we can so she can get her combined kidney liver transplant when she's 25 pounds. She's pushing the 12 pound mark right now so we're almost halfway there! She's up to 12 hours on peritoneal dialysis and they may end up pushing that to 14 hours if we can't get her offsite number below 50. Right now it's 65, so we're praying for 50 next Monday when we test her again. Still doing tests on other parts of her body (eyes hearts and bones) to make sure the oxalate isn't damaging other areas in her body.

Just the normal stuff going on here!!!  But we are very glad that we were able to find the missing gene in their blood and not have to put either child through a liver biopsy to confirm this genetic disorder. 

Always gotta look for the silver lining on each beautiful, fluffy, (dark) cloud!