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.


Monday, January 17, 2011

update

Well, it's been a while. My computer was out of commission for a bit...had to back everything up and give it a nice reboot...and then reinstall everything back on again. And I guess I've been out of commission a bit too. This darn cold is still hanging around our house; but I think, I really do think that I'm finally getting better!

Mabel is 2 months old!! Hooray!! That's something to celebrate. She is a happy, healthy, smiling little Princess with two cheeks full of kisses!! Claire was 2 months 6 days old when we found out she had kidney failure. Quite amazing to remember. Sometimes I can't even believe myself what we went through those 6 weeks in the hospital when the doctors were trying to figure out what was wrong with her kidneys. She was so young. So little. She was Mabel's age. Smaller than Mabel's size. She was a baby. I was still nursing her. And believe me, trying to keep nursing a baby in the hospital for 6 weeks is next to impossible. But somehow, we pulled it off and she continued nursing till she was 10 months old. I'd set my alarm in the hospital for the middle-of-the-night feedings and if Claire wasn't hungry to eat (which she most of the time wasn't because they had her on IV fluids), I'd pump to keep my milk production up. But nursing was one of the only comforts she had during those early months of her life. I kept that 3:00 am alarm on my phone long after we were home from the hospital. It was something to remind me of what we'd been through together. And ironically enough, we're still getting up for Claire at 3:00 am each night.

And now for Mabel too! But she's sure to wake me up on her own--no alarm needed! I'm so glad this 2-month old checkup (which Mabel will have on Friday) will have a more pleasant outcome than the last 2-month checkup we had with Claire.

We had a long day at the hospital today. 9:30 - 4:30. Claire had her annual liver transplant evaluation, which basically consisted of more blood work (no biggie), x-rays (which Claire has NEVER liked and STILL fights her way through), and a visit with the liver nurse and doctor. Things looks good...except that the past few weeks, her liver numbers have been a bit elevated above normal. Not surprisingly, Claire has had a bit of a runny nose and cough like the rest of us, but no where near as bad as what Jared and I have had. So the doctor thinks the elevated numbers are correlated to her cold, but wants to test them again on Thursday. If the numbers are still up they'll do an ultrasound of her liver on Friday. He toyed with the idea of scheduling a biopsy but decided to wait to see how things look at the end of the week.

Benson also had an ultrasound of his kidneys last week. Things basically look the same as what they had a few months ago. He has 4 or so stones in each of his kidneys. I'm not sure if that means he will eventually pass them or what course they will take. Main message...drink more fluids!! And he is so good at that, thankfully. I just hope he can get by without passing the stones with the accompanying pain that comes with it.

We made our first attempt of getting a urine collection from Mabel today. She showed us what she thought about it with a huge blow-out and a urine bag covered in poop! We'll try again on Thursday when I take Claire back in for the ultrasound. Hopefully round two will result with #1 making it in the bag instead of #2 making it all over the bag!

And me. I'm on an organization kick. My new motto is that I will have nothing in my home that I do not believe to be beautiful or know to be useful! I love a clean, organized, happy home. It makes me happy! And I even did my first week of menu planning this week. Wow. This is a big! And just to remind myself how amazing Jared is, while we were at the hospital all day, he vacuumed, swept, and mopped the floors. I love the smell of pine-sol and I love the husband who used it!

1 comment:

Terry and Diana said...

You are amazing. It is hard to believe that one person could accomplish such a monumental task. But with God's help you have ben able to achieve the goal.

What ablessing Claire is to the family.

Hope you get over your cold soon.

Good luck in getting the house organized with 3 small children.