It’s 1:30 a.m. and I should be sleeping, but I’ve been meaning to do this for ages, and I promised myself all day I would update about Amelie, especially since a very kind lurker came out of lurkdom to ask in particular about Amelie. Thank you Jen! And also because there’s lots of other stuff I want to blog about, especially my parents’ recent visit (they just left Nagano this evening and are flying out of Tokyo tomorrow morning), but I really need to update about Amelie before I get there.
So, first of all Amelie’s arm…we went to the university hospital and saw a doctor in the genetics department and then the arm specialist. The appointment with the geneticist is to ensure that nothing else is wrong with Amelie aside from her bone anomaly. Her physical development is right on track. She measured a little small in both height and weight, but within her age range and proportional, so the doctor said there is nothing to worry about for right now, but we took about 10-12 different x-rays of all of her major bones, arms, legs, spine, head, and we have another appointment at the end of November where we will x-ray all of the same bones and make sure they are all growing at the same rate and as they should be.
Next was with the arm specialist. Basically there are 2 surgical options for what Amelie has. The first is to operate on the arm to fix it at an angle that is more conducive to every day life. The bones are not separated, just rotated to a different angle. However, the angle that Amelie’s arm is fixed at is already a fairly good angle for being able to do every day things, so she wouldn’t need to have that surgery. The other surgery is to separate the bones to allow more range of motion in her wrist. However the doctor said he has performed the surgery 5 or 6 times with very limited success, and everything I have read on the internet also suggests that there has never been a very successful surgery performed to correct this particular anomaly. Also, the surgery itself takes 6-7 hours, requires 2 weeks of hospitalization, a long rehabilitation period, etc. so Amelie herself would have to really want to go through all of that. Plus because the surgery involves nerves, she would have to be able to tell the doctor “that hurts” or “I can’t feel my fingers” and things like that, so he said the earliest he would even consider doing the surgery was when she is about 6 or 7 years old, and that’s only if she really wants it.
For now, we will go back and see the arm specialist in 6 months, and then again 6 months later, and then probably once a year after that. We will continue seeing the geneticist every 3 months for a few years I think. Akinori and I are hoping to be able to raise Amelie so that she doesn’t feel a need to have surgery, not because we plan on doing everything for her, but because we plan on helping her find ways so that she can do everything for herself and lead a perfectly normal life and not feel too inconvenienced by her “special” condition, because honestly, that’s how I kind of feel about her arm. It’s what makes her different from everyone else in a special and wonderful way.
Both doctors, especially the arm doctor, were amazed at how quickly Amelie’s condition was discovered though. He even showed me in a medical book where it said that it’s usually not found until a child turns at least 1, but most often between 3 and 5 years of age. Seriously, don’t ever mess with mother’s intuition!
Perhaps my blogging mojo will stick around long enough for me to blog about my parents’ visit with us these last two weeks. There’s some serious venting that needs to be done!
It was so late when I wrote this post last night that I forgot to mention her legs! Amelie’s leg braces are gone! Yeah for one less thing to worry about!!