Gearing Up

So this is the deal: Two surgeries, six weeks apart. A third a year from now. God willing, none beyond that. They'll call us this week to set the schedule, but it will probably be the week after Valentine's Day.

The first surgery, a five hour procedure, to make it so she can put her right foot flat and have a ninety degree bend in her knees (a quadricepsplasty, and talipes equinovarus surgery without osteotomy, but I don't know what type, if you want to Google it). Hip-to-toe casts for six weeks. The second surgery, about three hours, to put her right hip back in place (osteotomy and open hip reduction), using a metal plate in her pelvis (won't that be fun, trying to explain to airport security that my toddler has a metal plate in her hip--I can see their looks of disbelief now). Six weeks in a body cast, meaning up to her waist and down her right leg. Possibly another few weeks in a short cast for the foot. A year from now, surgery to remove the plate once she has more bone in her hip. She'll be in the hospital two or three days each time. Any other surgeries would be because something went wrong.

The expected outcome? We hope that she'll be able to put her right foot flat, and not need a brace on it in adulthood (meaning she'll probably need one throughout childhood). We hope that she'll be able to bend her knees at least ninety degrees, so she can climb steps and sit in a chair. People with arthrogryposis tend to have less function afterwards than others because their joints are stiffer to begin with. Trust me when I tell you that you don't want to know what the worse outcomes might be, as she might end up worse off than if we did nothing. But those risks are very small, and her doctor thinks she will have a good outcome. Well, good in a relative sense. Not being able to wear high heels to your prom isn't a good thing, or go rock climbing, or take ballet, or anything else you need bent knees for, isn't good in my opinion. And if anyone else tells me I should just be grateful that she's alive, I'm going to bend their knees in ways they won't like. Or perhaps I'll say, "No, I'm really not. I should have just aborted her, because I wanted to raise a ballerina. What am I spending all this money on doctors for, anyway?"

I had a tough time as a teenager. I missed out on a lot and didn't graduate from high school because I had severe migraine headaches starting when I was fourteen. I felt like a misfit, "There's that girl with the headaches. Do you think she's faking? I think she just wants attention". I wanted my daughter to have the chance to be normal, which I didn't have. If she wanted to be the freaky girl with the weird hair, then fine, that's her choice, but I wanted her to have the choice. I know that some people with disabilities breeze through life on the sheer force of their personalities so that no one notices anything different about them. I was not one of those people. And I know things could be worse, far far worse, but as much as I would like that thought to be comforting, it isn't. It isn't really that comforting to know that you can just adopt when you find out that you will never ever be able to get pregnant. It isn't especially comforting to know you can have another baby if you have a miscarriage. It isn't comforting to know that my child could be dependent on a wheelchair or ventilator all her life, because no child should have to go through that. Maybe she wouldn't want to be a ballerina, or a fighter pilot, or a competitive runner. Maybe the idea of physical activity will be appalling because it would take her away from her science experiments or her painting, and the only boys (or girls) she ever wants to date would never consider not dating her because she has a limp. I just want her making those decisions on her own, instead of having them made for her by her tendons.

I asked the questions that I wrote down. I talked to T., who will go with her into the OR while they put her under. Thank you to those who pointed out this was difficult, because I didn't know that. When she was put under the last time, they didn't let us go in because she was so little, and the docs thought it would be unnecessarily distracting. I think I have done enough of the hard stuff for a while, so it is T.'s turn. We get pagers during her surgery and they are supposed to page us to go back when she is brought into recovery and set up in there, so in theory we'll be there when she wakes up, though we didn't quite make it last time. The rooms are all private and have space for one parent to sleep there, and luckily we live in the same town so there isn't a question of paying for the other parent to stay in a hotel. They have dogs come in a couple times a week to see the kids, so she'll won't even miss having her doggie around. I just want to get this over with, so we can move on with our lives.