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, October 26, 2009
Oct 26
Just another day on dialysis today. Thankfully, everything went smoothly. However it did feel like an extra l o n g three hours of dialysis today. In part because I'm not feeling 100% well and just don't have as much energy to entertain. Even one of the doctors that stopped in today said, "she looks board!" Oops, guess that's not good if the doctor even thinks she looks board! Anyone have any fun suggestions for stationary entertainment that holds a 2-year old's attention for more than 2 minutes?!
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4 comments:
Nat LOVES Mr. Potato Head right now. She plays with it really well. Seriously for like 1/2 hour at a time. She also has a little picnic set that she likes to play with. She sets out the food and plays like she is eating and stuff. It is cute.
Hope those suggestions help!
Based on the video you have posted of the two of you playing during dialysis, you've pretty much do everything you can. When my daughter was two she loved stickers, easter egg hunts, and playing nursery. I don;t know if it's possible, but you could fill plastic eggs with little toys/treats/stickers and hide them in her small little area to find. As for nursery, we would sit all her animals around her, do songs, read them a book, maybe give them a nap, and pass out a snack or pretend snack. Make the animals interact and share toys or not share toys (she loved to see them argue and then be the mediator). You look like you're pretty good at making animating stuffed animals so this will be right up you're alley.
Can you make a fort on her hospital bed?
Hi,
You don't know me, but a friend of mine posted a message on her blog regarding the fundraisers going on to raise money for your family. So, I guess I would consider myself a friend of a friend. I feel deeply for what you all have been going through, and am amazed at your strength and dedication to helping make your little one's life as happy as it can be!! I follow your blog everyday to check on little Claire and am always thinking positively about her recovery. I just thought I'd mention that I agree that stickers are a fantastic distraction for a 2 yr old. I was obsessed with them when I was a kid, and my nephew loves playing with them as well. For his birthday, I bought him a Thomas the Train sticker book from Target that came with 150+ stickers and pages and pages (like a coloring book) to stick them on (and I am sure they have more girlie ones like Disney princesses or Dora the Explorer). I just thought I'd share in case you were still in search of some new ideas. Happy Tuesday! - Lisa
Hello,
Like the previous commenter, I follow your blog every day and wish you and your family the very best. I have raised 5 kids and when they were young I always carried a roll of tape in my purse. When they didn't have stickers tape was just as fun. They would stick it to each of their fingers, toes, etc. It was great for those moments when they need to be kept entertained for a few minutes.
Also, have you tried pipe cleaners? You can bend those into endless shapes and characters etc. Have you heard of wiki stixs? They are like wax covered pipe cleaners and stick to windows or whatever. They would keep our kids entertained in the car or on transatlantic flights.
I hope these ideas help!
Best wishes,
BK
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