Jan 13 9:00 pm

We had a busy day today. Labs went quickly this morning...they drew 16 cc from her little body! It's a good thing our bodies create more blood when needed (thanks to a working kidney) or Claire wouldn't have any blood left after all the blood she's had taken from her! But everything still looks good. We like good reports. We met with the doctor this afternoon and no one has any concerns about her. She's one active, healthy little girl! She still has the runny nose, but thankfully nothing more has come from it.

We then met with the dietitian. She's going to help create a feeding schedule for Claire to see if we could get to feeding her double the volume every two hours instead of feeding her every hour. It would certainly make life a little easier for me to only have to feed her every 2 hours and it would also help Claire's tummy start to recognize feelings of hunger. We'll be starting some occupational therapy soon for Claire to help with her oral aversion. I know it will be a long time before she'll be ready to eat on her own, but might as well start working towards it now.

After the dietitian, we met with one of the Study Coordinators at Mayo. They wanted to see if Jared and I would be interested in having Benson participate in a research study to help patients with primary hyperoxaluria. Claire did the study about a year ago and the medicine didn't seem to make much of a difference in her oxalate levels. They have done a few things to change and hopefully improve the medicine and are looking for about 15 people to participate. We'll read more info about it tonight and then make our decision. It would basically consist of Benson taking the medicine, called Oxabact, twice a day, along with one additional medicine, labs, ultrasounds, and a number of 24-hour urine collections. It would last for 7-8 months.

How wonderful it would be if they could find a cure to this genetic disease that didn't require transplant!!!!


Thanks to the Teeples, the army game is Benson's new LOVE. All our fingers are bruised from flipping rubber bands to knock the army guys down!! Claire's even starting to learn how to shoot the rubber bands!