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, March 16, 2011

today

Here's a bit of what I did today: take Claire to the hospital, give medicine, give Claire her milk, feed Mabel, go to Benson's school for him to serve us at their pretend cafe, go back to the hospital to pick up a new medicine, warm up dinner for the family, clean the house a little and STOP Claire from itching!!

Unfortunately, this morning Claire's rash came back from the allergic reaction she had over the weekend. The doctors warned us this could happen. When she was in the hospital Sun-Mon they gave her some high doses of steroids and other medicine to help her body deal with the allergic reaction....and it worked really well. Within a few hours she was not itchy or red at all. But they said that once she's off those things for a day or so, we could see a reoccurrence of the rash....because some of that medicine will still be circulating in her blood stream. And so they were right. She was miserably itchy for the first few hours this morning and just plain old itchy for most of the rest of the day.

Rashes, especially itchy ones, are SO NOT fun for little ones! They just don't have the self-control NOT to itch....even if it draws blood! I finally resorted to putting her snow mittens on her hands (and surprisingly she kept them on) so she could "rub" if she needed to but wouldn't draw blood with her fingers. When we were at the hospital this morning for her antibiotic dose the doctors came to see her again and prescribed some stronger anti-itching medicine which now finally this evening seems to be helping.

I feel so bad for her. She's just had a rough few weeks! Hopefully we can stay on top of the itching stuff now that we know it's a problem until this medicine gets out of her sweet body!

A few bright notes...

Mabel is 4 months old and couldn't be cuter! (Although she does have a cough and runny nose which always makes baby life a smidgen more difficult for mom and baby.)

Benson read his first book to me yesterday and again today: Luke Skywalker's Amazing Story.

And the sun was shinning today. Puddles of water were all over the sidewalks and road. And that's exciting!

4 comments:

Grandpa Terry and Diana said...

What a beautiful baby. The picture of Mabel is as cute as can be.

Hopefully Claire will get through the seven year itch. I mean the itching caused by the medication.

Congratulations to Benson on reading his first book. Keep up the good work there are about a billion more books to read. And that is the ones just in English.

~adelle said...

My My My. Hang in there folks. This has been a rough few weeks! Mabel is darling. Couldn't be any cuter!

Unknown said...

Life's like a jumprope! Up, down, up, down...
Keep your heads up, like you always do!
Luvs!

Dianna said...

She is an absolute doll! Sweet Claire is in our thoughts and prayers.

Love ya,
Dianna