Why?

The Wrong Side of 6 A.M.

Cassie has been up all night in pain. I just gave her a fourth round of meds, and pulled out the heavy artillery, the Versed. I then informed her that if she doesn't go back to sleep, next time I'm coming back in with a cast iron skillet. She retorted that I'm lucky she's too tired to get up and call Children's Services. We get kind of weird after a night of no sleep, but I'm glad she appreciates my sense of humor.

Cassie hasn't been feeling great this week. She's been very sore, especially on the bottoms of her feet, and extremely itchy. She's needed a lot of pain medication the last couple of days, much more than usual. Sometimes increased pain can be an early sign of infection, so I'm crossing my fingers that's not the case this time.

Last week Cassie went to the roller derby with her friend Rachael, but wasn't able to stay very long. She said the heat was just too much for her. I hate that not only pain, but simple things like the weather deprive her of opportunities to go out and have fun.

After eagerly stalking the internet all week for Monster High news coming from San Diego Comic Con, she got a very special surprise in the mail today; a SDCC exclusive Wydowna Spyder Monster High doll. I'm so grateful to our friend Sean for connecting us with his friend Rita, who picked up the doll for us, then insisted on sending it as a gift.

The Little Things

Cassie has two friends over spending the night tonight. They have played video games and had ice cream and giggled all night. It's amazing to see her light up, to see what an extrovert and true social butterfly she is. It's so hard for her to get out of the house and enjoy herself, so I have tried hard to have the kind of home where all the kids want to come over and hang out so that Cassie's friends feel comfortable coming to her. It's harder on her now, most of her friends her age are now driving, have jobs, boyfriends or girlfriends, or camp, or other activities that she just can't participate in, so she gets to feeling very isolated. But tonight she's happy. She's got two of her best friends here and she's just a regular teenage girl staying up way too late during summer vacation. I'm eternally grateful for these moments when she gets to feel normal and alive.

The waiting is the hardest part

One of the things that's most frustrating to me is about our Medicaid system is the constant waiting. For example; we'd been using a product on Cassie's back that we weren't thrilled with the results. It seems to be pulling at the skin and creating more blisters. After the Patient Care Conference, we were given some samples of a different product that works great and would suit her needs. It doesn't pull on the skin the way the other one does. So we have the doctor write a prescription that gets sent to Medicaid, and we wait for them to approve it. And we wait. And wait. Sometimes 6-8 weeks. In the meantime, we don't have this other, superior product, and Cassie has to deal with new, painful blisters every day from the old product. And it's like this for every change we make in our wound care routine. Every new product, or every time we need to increase the amount above the approved limit due to increased blistering, infection, etc. It makes me crazy. If it was their child, or their skin, I don't think the paper pushers would want to wait 6-8 weeks for relief.

Woman in Florida Needs Specialized Bandages

Monster High School Playset video review!