But Oh So Chic

Faux-fur and infant car seats don't mix.

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.

Today Is Delurking Day

...according to PaperNapkin. As I have finally given in and taken some Ambien (just a little--and it is the first time I've taken it when I'm alone with the baby--I'm really freaking tired of not sleeping), there will be no post until tomorrow, with the surgery update.

So to be fair, you all know a lot about me. Far more about my husband than he probably wants. So what about you? Really, darlings, I would SO love to know who you are, what makes you tick, what lottery you won that gives you all the free time in the world to peruse blogs like mine that are the equivalent of UPN sitcoms in quality entertainment. I have hits on here from all over the world, including those places hit by the tsunami. I've had multiple hits from Israel, Mexico, Slovenia, Singapore, Greece, and Portugal. I have had single hits from Iceland and Syria and the UAE and Slovakia and Hong Kong. From the US, I have Rutherford and Reston, but no states. So in honor of Delurking Day, I say to you:




Tell me all about YOU! I promise I won't stalk you all over the 'net, unless you want me to...

And after I hear about you I'll let you know what is going to be happening to Peanut over the next few months, with the end result being her walking and running.

All In All, A Good Day

My birthday was lovely. I woke up about 8:30, and T. was already cleaning up the kitchen from last night's black-eyed peas and greens dinner. I played with the baby a bit, and went upstairs to go online until breakfast, which he made for me. I then took a three-hour nap. I woke from my nap to play with the baby while watching the Packers beat the pants off the Bears (thanks, boys!). I then went online until T. was ready to go with me shopping for an entertainment center for the new stereo system he is buying me for my present. We didn't find what we wanted, but that's ok. I came home first, and went online while Peanut napped. She woke up when T. came home, and then my mother arrived to babysit while we went to the bookstore to wander around and spend all my birthday money. An unbelievable luxury, to have a babysitter while I look at books. Came home, put Peanut to bed, and spent the next few hours reading about wine and practicing reflexology on my own feet (T. would have done it, but he was so enthralled with the book I got him for Christmas, that I didn't want to distract him). A wonderful way to spend the day. I have to wonder, though, when I became the kind of person my oldest friend would think of when she saw soft, fuzzy, blue socks for sale (thanks Nic!).

I can't sleep right now, though, because I started thinking about Peanut's surgeries coming up. It is one of those things that you wish would never ever happen but if it has to you wish it would happen right away so you can get it over with. I feel bad because we never got a second opinion like you are always supposed to, and I feel like I don't know nearly enough about what is going to happen and why this is the way it is going to happen. I didn't do the second opinion because it would have been such a big deal to work out with the insurance and everything, and with T. gone all week every week it was just too much, just too much for me to do with everything else. I'm just hoping I haven't shortchanged her, that another doctor wouldn't have done this sooner so she'd be done with everything by now, or had some other better way of handling this. I was feeling ok until I met another mom whose daughter had the hip surgery, at 7 weeks old. I had been told Peanut would have to wait until she was at least a year old, but this woman's doctor told her that he didn't want to wait very long because it would be better for her to have it functioning early. Neither of us can figure out what the difference was in the situations--they have essentially the same defect in their hip. So now I'm wondering if we did the right thing by waiting, and I am stressing myself out even more.

The final appointment before the surgeries is this Thursday morning (7:45 am! What was I thinking?), and I will try to get most of my questions answered then. I am writing the list down as they come to me, and I'll be studying the anatomy of the foot and leg this week so that he can tell me specifics (many of you don't know this, but I am kind of a freak about anatomy and the human body and love nothing more than to pore over pictures of the muscles of the hand or lower leg--I would totally have a poster of the bones and muscles of the body up on my wall like at my massage therapists if T. wasn't completely freaked out by it. My favorite part of EMT class was cadaver lab, and I have a book about forensic skull reconstruction. Peanut will have an interesting education in our bookshelves).

I am asking a favor of my (few) readers. The only surgery--in fact the only stitches-- I have ever had (other than opening my blocked tear duct when I was an infant and my wisdom teeth removal and they don't really count) was the C-section I had to get Peanut. She had an outpatient surgical procedure in May, where they put her under, but she was out and home 6 hours after we brought her in. I don't have any experience with surgery other than that, much less surgery on babies. Anyone have any suggestions for me about what I should ask about? I mean, at this point I still have to ask what the names of the surgeries are and how long she'll be in the hospital each time, so that's how basic I am talking about. Any other time I think I could do this reasonably, but I can't think clearly right now. At the bookstore, I picked up a book for parents of disabled children, and opened it to a comment by a parent whose child was in a vegetative state after being given the wrong anesthetic during a routine surgery at the age of 1, so that is where my mind is when I think about this whole thing. I'll be given some basic information about the children's hospital, and I know I can call them with questions, but I don't know what to ask, other than can I sleep there. I know that Anna has some experience with this, and Jen's daughter was in the hospital for a while (though not for surgery). Any thoughts from you two, or from anyone else? Please?

Sorry to be such a bummer but I think I am PMS'ing and that's why this is causing so much anxiety right now this minute and that's why I can't sleep...

Happy Birthday To Me

Happy Birthday to Me, Happy Birthday to Me-ee, Happy Birthday to Me!

29! Again!