I had a couple of good chats with Shierry's physical and speech therapists last week. We're beginning to think about the accommodations she'll need once she starts kindergarten in the fall of 2018 (?!?!). Her physical therapist confirmed concerns regarding the banding around her right ankle. The same amniotic bands that slashed her face also wrapped around her ankle in a not-quite-death grip. She's lucky to have a right foot, basically. The band impairs her movement and flexibility. When she jumps on the trampoline, she always lands on the ball of her foot, never flat. She favors her left foot as she traverses the obstacle course. Even with regular massaging, the banding is still very tight, especially in the back. She'll need surgery to loosen the scar tissue that makes up the band. It will take two surgeries. Ideally, both surgeries will occur before she starts kindergarten.

There's also this tricky piece of tissue (muscle?) that is protruding a bit on the left side of her upper lip. It is becoming more and more prominent, and according to Shierry, sensitive to the touch. As her surgeon pulled down the skin that is now her upper lip from god knows where on her born face, we're not sure what this bit of annoying even is or where it comes from. As it's a surgical creation, I fear it has only a surgical solution.

Plus, gah, her eyes, y'all. The prosthetic is not staying in place. Even when it is in, all sorts of irritants get in behind it, become trapped, and her immune system kicks in against the intruders, causing an unseemly amount of mucus and gunk to consistently seep out. It's a problem. She notices. Other kids notice. On top of that, we cannot get goggles to fit the unique topography of her face. I've tried an expensive pair of prescription goggles, nope. I've tried an expensive pair of superhero, comfortable foam goggles, nope. Water gets in, it bothers her eye that she cannot close, it freaks her out, she refuses to put her head under water, rinse, repeat. I'm about to give up on swimming this summer and just deal with it next year.

Oh, and, today the Senate Republicans don't know what's in their health bill or what it would do. They're voting anyway.

This is absolute madness. What are their goals? What problems are they trying to fix and how is their bill (BILLS) going to address those? I've written before about my concerns. None of which have been addressed by my senators. John Cornyn says that they don't have the luxury of knowing which bill they're voting on. That is bullshit. This is entirely their process, they own it. I usually try to be polite, but I am furious. This is my daughter they're talking about. My other senator, Ted Cruz, has proposed an amendment that I guess sounds nice, but really exacerbates the problems already inherent in the original version of the BRCA. To the point where the INSURERS themselves are ripping it apart. The absurd bill to repeal the ACA but not replace it with anything would cause 32 million people to lose their insurance. People like us.

They don't know what bill they're voting on, they've held no hearings. They've literally never had any answers when I've called, nor have they replied to my letters.

Maybe your senator will actually listen to your concerns. Please, please, please call them this morning. We need your help. You can reach any of them at 202-224-3121.