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.


Wednesday, July 14, 2010

Ultrasound report

Claire had her ultrasound this morning to see about the status of the blood clot. Good news is it's getting better. The report indicated that it was difficult to see a lot of detail about it, but they can at least say it's better than the last ultrasound. It was quite funny today to see how difficult it was to get a good picture of clot. The clot is in such an awkward place...just to the left of her neck/throat. Here's the set up. Claire was to look to the right for 30 minutes (which happened to be away from mom and the tv), not move at all...especially her head, and don't talk. That's asking A LOT of a two year old if you ask me!! Holding still was not the hardest part of it all, though. The problem was every time Claire would talk, sing, or hum, it would cause "interference" on the ultrasound and not allow the technician to get a good shot. And if you haven't been around Claire lately, you should know about all she does is talk, sing, or hum. Asking her to be quiet didn't really work either; she just whispered her songs then...or ask over and over again, "why I have to be quiet?" answer....(or she just keeps asking) "why you have to do ultrasound?" answer... "why I have a blood clot?" answer....don't worry about it-just be quiet. whisper:"why I have to be quiet?" Oh it was fun. And if she wasn't asking me questions quietly, she was singing or humming. I had to smile. We did our best, but she's two!! And that's just about as good as it gets!!

SO I completely understood when the doctor told me the report. But was glad to hear things are looking better. The not-so-good news about it all is that because she still has a port in her for blood draws and infusions, she is still at risk of getting yet another blood clot where the port is. So for now, the doctor wants to keep her on the blood thinner, but will cut her dose in half. So she'll only have to get one shot, once a day, instead of twice a day. Better. yes. When our main doctor gets back in town this next week, they will discuss what the long term outlook is for Claire, as far as how long they want the port in for and if she should continue to get the shots the entire time she has a port. So we'll see. But for now...at least things are better!!

4 comments:

~adelle said...

I give that report one half of a smile!

Terry said...

Hi

I think that is pretty good for a little girl only 2 1/2 years old.

Terry said...

hey natalie can not what to see you next sat. what do they think that claire to stay still that long. tell the kids hi for me. love ya aleena

Ryan & Keri said...

That's hilarious! I LOVE the "why" stage! Glad things are going down with the blood clot. How are you feeling? Still nauseated? Hang in there, Natalie. Thinking of you. We were in Denver a week and a half ago and I was missing you.