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.

Tuesday, July 6, 2010

busy tuesday

Well darn...no more swimming lessons. Turns out Benson has swimmers ear! He started complaining about his ear hurting yesterday and told me this morning that he didn't sleep very good because his ear hurt all night. He never got a fever with all this, but still complained all day today about a hurt ear. So this evening we took him in to an instant care doctor and she said he had swimmers ear. I guess it's likely to happen when people are swimming a lot and their ear canal is moist and doesn't have a chance to get dry. And since he learned very well how to dunk under water, (do a bob as they call it in swimming lessons) he's been practicing that a lot over the past week and a half. So now he gets drops three times a day in the ear and needs to keep it dry for about 2 weeks. He was kind of bummed that swimming lessons would be over early for him, but I think he was also pretty relieved to get the drops and know his ear would feel better soon too. It was fun Fun FUN while it lasted!!


Busy day at the hospital for the kids and I today. 9:30 - 3:00 . Surprisingly, the only thing Benson said as we finally got in the car to come home was, "We had such a fun day at the hospital today, uh Mom!!" I smiled and said honestly (I think), "yep, we sure did." They are such good kids. They were champs after a long day. Even a lady in the elevator today commented that those two kids really do love each other. And so they do.

Benson and Claire both did blood work. And if you ask them about it, all they'll tell you is....and I didn't even even cry. That's what just about everyone they talked to today heard over and over again :) They got duckies for their reward. Oh the tub full of duckies we are accumulating! We met with the doctor for Benson about the study drug he taking. She actually doesn't get results from the blood/urine tests we did today until the end of the study. So basically it was just a check up to see how things were going for him and make sure all is well. And it is. He's taking the medicine just fine and now gets to do two 24 hour urine collections over the next 2 days. Time to pee in a cup all day...all night for the Benson boy. Good thing he thinks it's fun. I do too. honestly.

Claire is doing great as well. We met with a doctor this morning who is studying the effects of blood clots in pediatric patients....so it was just another "study" appointment...but she doesn't have to do anything else for it. We just filled out a survey and had the doctor examine her. She's still getting heparin shots every night and morning for her blood clot, but there is light at the end of the tunnel...I hope. She'll have another ultrasound of that clot next week and it will hopefully be cleared up enough to stop the injections. We'll see next week.

She also had occupational therapy today to help with her oral aversion and Benson and Claire both had fun smearing pudding on a mirror, smelling lots of different smells, and giving frogs and fish a bath in a bowl full of pudding....with a rinse in soapy water. So nice to do it at the hospital and let them clean up the mess!!

Happy to be home after a busy hospital day.
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2 comments:

jenreb said...

You don't know me,my name is Jenny Reber, but I served with Bryce Neeley in Micronesia Guam. I have a little boy that had a feeding tube and it is such a struggle. He was swallowing formula into his lungs when he was a baby and kept getting pneumonia. We didn't find out until he was 18 months old so he was eating baby food and we just had to cut him off cold turkey. It was hard, and it is so hard to reintroduce them to textures and all that. I wish you luck with that. I know I prayed a lot and it was just after his little sister was born that we were finally able to take his G-tube out!!! He had one for two and a half years. It's a lot of work, but they are so worth it.

July 9, 2010 at 11:06 AM
Momma bear said...

can't you get a hat for the toilet instead of a cup all day, I have one and it's the most used piece of free plastic I have ever had!!! :-)

July 10, 2010 at 2:15 PM

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