Wow. I can't believe I haven't written since Tuesday. I guess this week went by fast. Claire has been doing so much better with her exploration of foods. We're really making a big BIG deal of any little thing she does food-wise...and I think she's liking the attention she's getting from it...which is okay with all of us! She's now starting to say with a smile on her face after trying something new, "I'm learning how to eat!" This week, she's eaten a handful of cheerios (BIG deal...hasn't ever been able to get one down before without choking on it), Swedish fish, a fruit snack, spaghetti noodles cut up into small pieces, green beans in small chunks, crumbs of bread torn apart, and grated cheese. I don't know what's all the sudden sparked her desire to at least try things...but we're thrilled about it! She's been gagging a lot less (although still some) and is excited herself about this new adventure. Yeah! Baby steps. But at least we're stepping!
Tomorrow morning Claire will have a kidney biopsy. It's routine to do a biopsy at 4 months post-transplant, but for some reason, 4,5,6 months came and went and were finally getting around to doing it now that she's almost 7 months post transplant. Can you believe it's already been 7 months! Wow. That has really gone by fast. So there's nothing to be concerned about. Just a routine thing they do to make sure all is well inside. Her kidney numbers have always been great, so we're not expecting anything to come up new tomorrow. While she's under anesthesia for the biopsy, they'll also do an Echo on her heart to make sure all is well with that. After she wakes up, she'll have a catheter placed for a 24-hour urine collection. That's not fun for her and will certainly limit the activity of this VERY active toddler. I'm just hoping it stays in for the full 24 hours and we don't have to start over at any point. That's a pain. We're not sure if they will let Claire come home tomorrow with the urine catheter in or not....so we'll see where we end up spending the night. They will do the "4-month" routine liver biopsy in another month. Too bad they can't do them both at the same time. But because of the risk of bleeding, they can't do them together. Oh well. We're used to having a good time at the hospital. We always have lots of fun, as Benson reminds us often!
We got Benson's two 24-hour urine collections done this past week but it was a bit more of a struggle this time. He just get's so busy playing and doesn't want to take time for potty breaks. I'm sure no one else out there can relate! But we got it whipped and can check that off the list for another 8 weeks. Yeah.
Another fun hospital day on it's way. Better get some good sleep tonight.
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.
Sunday, July 11, 2010
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