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.