At least they should not need any blood tests, since I was told the last time that they would keep it so they could use the same sample again, instead of subjecting her to multiple pokes. I've tried to find the cached version of my pre-site-crash entry on the blood test, but alas, no luck. In a nutshell: I had to pin my 10-lb baby to a gurney so the nurse could take three vials of blood from her scrawny little arm with a regular, adult-sized needle. She was TEN POUNDS!

It was horrible. I keep telling myself that an x-ray or bone scan has got to be better than that, but I guess I'll have to see.

I don't know how long it's going to take, or what information we'll come away with, if any. After her blood test, we were told it would take "a few weeks" to get the results, and it ended up taking four months. (I can't find the cached site entry for actually getting the results, which turned out to be negative, but we got them in October.)

All I know is, I'm expecting to feel like crap.

These appointments are never easy. Some doctor or counsellor poking and prodding her and telling me about her "unusual" features. I tell you, these people need lessons in tact. I don't care what's up with someone's baby, find a way to phrase it that doesn't sound like you think they're ugly. That is the last thing a parent wants to hear. After one of these appointments last year, it took me ages to be able to integrate this experience with the rest of our lives--with going out in public and hearing so many compliments on how beautiful she is. I've decided to believe the public, and doctors be damned. What do they know? It's not like any of their previous diagnoses have been right.

Some of those links are cached by Google pre-site-crash, in case any of you who are new are at all interested in some of the more detailed history we have on this. I can't believe we've been dealing with this in one way or another since November 11, 2003. That's 18 months now. And everyone is sure something is wrong, but no one seems to be able to tell us what, though they all have their own opinions (and every time we go back, their opinions get better and better).

I used to hope that someday we'd visit a doctor and he or she would tell us that it had all been a terrible mistake, and Frances was perfectly normal and healthy. I used to hope that her growth would catch up and prove them all wrong. I used to hope that if it was something, it would be small and fixable. I no longer hope for these things because my hopes keep getting dashed and it's too painful to keep wanting it.

All of the doctors seem certain that there is something going on. We all know she's eating enough and digesting it properly. Her development is quite normal (except for the walking) and by now if this was in any way related to malnourishment, she would be way behind. She is as big as she is capable of being. They also say that her fontanelle is very large for her age, which I suppose is true, since it seems to extend from about mid-skull to around the top of her forehead and is still a few centimetres wide. And they say that her ears are low set (also true--her glasses are always slipping down) and her eyes are prominent (true again). They say her thumbs and big toes are a bit broad. They say that it is very unlikely that all of these things occurred together by chance, although so far no one has been able to pinpoint any genetic condition that could cause all of these things together, without also causing serious health problems or developmental delays. Of course, the low-set ears and prominent eyes and broad fingers/toes are so mild that they readily agree it is well within the bounds of normal. So what they are really concerned about is her fontanelle and her size.

I've spent well over a year now researching this as much as I can. I can't find any known genetic disorders that cause a late-closing fontanelle and slow growth and nothing else. She should be having bone fractures, or heart attacks, or delays, or the whites of her eyes should be blue. Her fingers should go off at strange angles. Her legs should be bowed. Or her limbs should be obviously too short or her forehead too prominent. She shouldn't be able to use words so well, if at all. She should have poor muscle tone. If any of the known genetic disorders were causing her smallness and her open fontanelle, one of these other things should be happening too.

So once upon a time, I hoped that someone would tell me she's normal. Now, I just want closure, and it doesn't look like I'm going to get it. I want someone to give me a long latinate word that I can't pronounce so I can write it down and look it up and find out what's going on; I want to have that word in my back pocket so the next time someone asks why she's so small, I have an answer. I want to be able to use it to look up other parents who might have gone through the same thing, so I can have one person in my life who understands what this is like and can reassure me the way that I've been able to use my experiences to reassure others.

I want closure. I want to know. But it looks pretty likely that I won't. Instead Frances may be one of those people I read about in the medical journals, where the abstracts read "2-year-old subject male standing 28 inches and weighing 21 lbs presenting with unknown syndrome characterized by mild hypoplasia, macrosomia and hyperextension of the joints, possibly connected to FGR genes." I don't want her to be a case study, a medical mystery for students and doctors to pore over, trying to be the next doctor to crack another genetic mystery open for the Good of Mankind. Not that I can stop it, if it's going to happen.

I'm all for medical progress. I just want them to keep their grubby paws off my little girl. I don't want them to progress by turning her from a beautiful, vibrant, fun-loving, sociable little girl into a black-and-white faceless photo in a medical textbook.

We'll see. We'll see we'll see. There's nothing I can do about it, if it's going to happen.

So if I can't have closure, then what I would really like is a competent, caring, knowledgeable doctor. Someone who doesn't make it any worse than it has to be. That's what I want. And if anyone reading this is so motivated I would appreciate a few crossed fingers.

I don't know how long this appointment or any tests might take, so I don't know when I'll be getting back, but I will make a point of posting an update when I can. It might be today, or it might be tomorrow, depending on where my head is. I don't know how likely it is that I'll be going in to work tomorrow, either. We'll see how it goes and how traumatized we all are.