To The American Taxpayers

We recently had an insurance change and Peanut's last surgery was not in-network*, so the plan did not cover $2100 of her care (so far--I believe there are more charges coming). But because she is covered by Medical Assistance, through the Katie Beckett waiver**, the state will pick up that difference and anything else insurance refuses to pay. Which is good, because we don't have $2100 now, and will not have it anytime soon.

So thanks for paying your taxes. We really appreciate the help.


*It should have been, because they had no doctor who could have performed the surgery in-network. I'll be looking into this.

*The program is federally funded, and all states are eligible to participate (Ohio is the only one that refused, I believe), though they can set their own inclusion requirements. I don't know why Ohio turned down cash to help disabled children, though I have some theories.

Clinic

I thought I should explain a bit about the clinics I mentioned taking her to. First of all, I am not unhappy with her surgeon. We have been thinking of taking her to a clinic anyway, because we are not happy with her leg braces, which we believe are not helping her as much as they should be. This opinion was seconded by her physical therapist recently as well. While her surgeon is responsible for ordering her braces, the details are up to the people who make and fit them, who have had a hard time fitting them properly. I am not sure who should have informed us earlier that we had other options for bracing that might work better or might have been used in tandem with what she has, but now we know. Her surgeon was very receptive to the idea that we see someone else for an opinion about her hip, because he is very perplexed as to why this happened and he is quite a perfectionist. The problem may be not with him, but with her anatomy. She may just have a hip that won't stay in. We are hoping not.

An arthrogryposis clinic brings all the specialists together in one room--a surgeon, physical therapist, occupational therapist, orthotics maker, and sometimes other specialists. Because treatment is so interdependent, a short time together is very important. Here, her PT, OT, and speech therapists meet regularly to discuss her case, but the surgeon and orthotics people do not get involved. I have always felt this is a problem, because her therapists are so dependent on what the other two do in order to make progress, that it is just really difficult to communicate.

The other benefit of a clinic is that they see so many kids with AMC. Peanut's PT has been working with kids over 30 years, and has had only about 5 patients with it. While AMC has aspects that are similar to other conditions like cerebral palsy, they are in fact rather unique. For example, her clubfoot treatment followed the standard protocols in most areas, except that instead of changing casts every 5 days, we did it every 10 days, because the tissue of her foot is much stiffer than the average patient. Her foot will revert back in a different pattern than in a child with CP, so the splints she wears has to be different. But orthotics makers see many more children with CP than AMC, so they are not always aware of the slight adjustment that needs to be made to the splint to make it work for a kid with AMC--Peanut's wasn't.

The premier facility is considered to be the University of Washington Children's Hospital clinic in Seattle. The woman who literally wrote the book on arthrogryposis, Dr. Judith Hall, worked out of that hospital. The other very highly recommended clinic is at the Alfred I. DuPont Hospital for Children in Wilmington, Delaware. I 've yet to hear anything bad about that place. We have secured an appointment with them (Seattle never called back-must not need the money), but it isn't until January. There are other clinics, in New York City, Houston, and Ann Arbor, MI, that are also well-thought of (and have the benefit of having people we know and love living in the cities). Most Shriner's Hospitals have a multidisciplinary approach as well from what I understand (and there's one in Chicago, which would certainly be convenient), but these are our first two choices. Because we couldn't make things easy or anything. I will be seeing if we can get in somewhere else sooner, though, so all bets may be off. I'm impatient that way.

Okay, now that I've done that, maybe my thoughts can stop swimming through my head in a whirlpool and I can go to sleep.

***The painting is The Club Foot, by Jose de Ribera (1642). While he has clubfeet, he also appears to have the hand positioning of someone with AMC.

Bates Motel

We got to come home last night. She fell asleep on the ride home at 6:30 and stayed asleep until this morning, when she awoke screaming. A dose of Tylenol 3 and some Little Bear, and she was happy. At least until she realized she couldn't play at her toy kitchen because it hurt to bear weight on that leg (she sits on a stool in front of it, and stands up to the counter from the stool). Even then, as long as she could play with her toy vegetables in the chair and watch Wonderpets*, she dealt well.

Then, tonight, it was time for a shower and dressing change. "No, I don't need a shower!" was the refrain of the evening. She can't have a bath until the wound is scabbed over, which is interesting because it means that I have to hold her in one arm while she clings to me and screams and I use my one free hand to soap her head up. Big Daddy was able to help, but it was still very stressful on us all. He said, "Um, there's blood", and I looked down to see Psycho being recreated in my tub. The gauze under the rubbery tape covering everything had gotten wet, and so the blood it had soaked up was now rewetted and turning the water bright red.

Then, "No, I don't want my band-aid off!" during the dressing change. Her wound is closed with tape, then covered in gauze and the rubbery stuff that seemed to meld with her skin. Even working the edges up with oil made her cry piteously. She was pacified somewhat by the promise of wearing her "Princess Dress**" afterward, but it took a good while before she could calm down and believe me when I told her we were done.

We'll stop the prescription drugs during the day tomorrow and see how it goes, and hopefully she won't need them at night either. I know there are a lot of parents who deal with this and much more on a regular basis, but I don't know how they do it. It has been easier for me when I could tell myself this was going to help her walk, but I'm feeling a bit less hopeful now and I think it makes it harder to suck it up when she's miserable and do what needs to be done.

*My God, when will they merchandize that show already? I am going to have to buy TiVo just because they aren't making DVDs of it.
**The Princess Dress is the least offensive frilly pink nightgown I could find at the Disney store. I make no apologies for getting it; I think it is natural and healthy for her to explore the hyperfeminity it represents, particularly since no one she is around will reward her for it anymore than they will her wearing her black t-shirts and Chuck Taylors. After she got home with it, she put a doll dress on her Mickey Mouse and dubbed him "Princess Mickey Mouse" and "Cinderella Mickey Mouse". In her world, everybody gets to be a princess. Besides, not a one of you could have looked at her sweet little face and not gotten it for her when she asked so nicely.

Not So Great

Well, her femur isn't in her hip the way it is supposed to be. The doctor couldn't get a really clear look at it, but he's 95% sure it's out of place. He very nearly decided to go ahead and fix it right there, to save having to go back, but that would have necessitated putting her in a spica cast without us having a chance to prepare for it. Plus, since this is apparently the first time he has had one of these procedures fail, he wanted to take some time to review what might have gone wrong, lest the next time we go in it fails again. So they took out the metal and sewed her up, and we'll get a CAT scan within the week to confirm it is out. We are then going to attempt to take her to an arthrogryposis clinic, either in Delaware or in Seattle, where she can be evaluated by people who do little but see kids like her all day. Her surgeon will discuss their opinions with them then, because he is hesitant to even redo the work if he can't be sure it won't come out again. Which would mean a permanently dislocated hip, which would mean an even-more-screwed up gait and possibly other complications as she grew. On the other hand, there isn't any point in going through such major surgery if it isn't going to actually fix anything.

Not what we hoped for, but she's doing all right and looks like she can come home today. Without a body cast. Whew.

For Real

Yes, I'm still alive. Technically, anyway. But that's not the important thing.

The important thing is that Peanut is currently in the OR having her surgery. Yes, really.

It seemed kind of weird for it to be happening on this day of all days, but Karen is getting baby Maya today (actually has her by now), so I decided that since she is retaking the day for joy that the least we could do is get over the freaky feeling and get on with our lives. I just wish I could have gotten some of the really good drugs they gave Peanut to calm her down beforehand.

God is getting a whole lot of extra prayers today, but I am hoping He still hears my little one about having her hip where it is supposed to be. It is a small thing in the grand scheme of things, but anything helps.