Test Set & Other Crazy Things

After a couple of weeks and lots of problems scheduling, Izzy's imaging tests of her heart and lungs have finally be set. She will have those done on the morning of Thursday, July 28. It was such a pain to schedule. I was very close to declining the tests all together. I knew I couldn't though as I would wonder if I had missed something that could lead to a therapy or treatment to help Izzy feel better.

Overall, the last couple of weeks have been okay. Izzy is not quite as bad as she was at the end of the school year, but she still gets pain a lot. When Izzy takes off her oxygen, her oxygen saturation falls and she turns blue. She still tires easily and sleeps a long, long time. She vomits a lot. She doesn't eat much at all. We're lucky if she eats a real meal once every couple of days. She does nibble from time to time throughout the day, but I can't even remember the last time she ate the equivalent of three real meals in a single day. There are many times Izzy can't even eat ice cream any longer. The pain and nausea is too much.

All that being said, Izzy is very excited for Izzy's Ice Cream Challenge and Izzy's Ice Cream Social. I hope all of you in town on Saturday, August 6, 2016, will join us. There will be lots of carnival games and prizes for the kids and of course, the make your own sundae bar! Cost is $7 in advance or $10 at the door. You can buy tickets at this link: http://weblink.donorperfect.com/2016Izzysicecream. if you can't make it, remember for every $40 donated, you will get an Izzy-designed car magnet and button to show that you ate ice cream for Izzy. You can donate at the same link where you buy tickets: http://weblink.donorperfect.com/2016Izzysicecream.

Before all of that though, Izzy is doing something crazy and exciting. Izzy is going to sleep away camp. Heart kid camp to exact. Dale and I are very nervous, but think it's worthwhile. We already had to cancel our vacation and do a staycation instead because Izzy couldn't travel and she misses out on so many things. This camp was specifically created for kids like Izzy. There are nurses on staff, cardiologists who will be there, and one counselor for every two kids. They have a medical director.  I spoke at length with the nurse practitioner last week and they will accommodate all of Izzy's needs and help her have fun while being safe. Izzy is very excited about the off road wheelchair they have for her to use while there. We are nervous, but very happy for Izzy. Now we just have to make sure all of the medications, forms, and everything are in place for her to have fun. We've added a lot of extra work to Izzy's hospice team to get it all set up in time (we didn't learn Izzy could go to camp until the middle of last week!).

Hope you enjoyed pictures from the staycation and if you want to see family photos we had taken last month, check out the link: http://m.mp-app.com/arisingimages/stothers/.

Thank you for keeping our girl in your thoughts,

Mel