Earlier this week, Niki's nurse case manager called me to report the results of Monday's lab draw. He was happy to report that Niki's INR was 2.5! (They want her number to be between 1-3 so this is good news my friends!) Which of course means that her new factor dose @ 160mcg is doing it's job. I am even happier to report that Niki has had no signs of any new GI bleeds since her dose was increased. She also has an appointment with the GI specialist next week for further work up. I'll keep you posted, of course.
But man, Dr. Awesome is doing a fabulous job with my rare little girl, isn't she?! :)
Speaking of rare...I was working with a pretty, young patient yesterday who so happened to have moderate Hemophilia B! You've heard me say this a thousand times, but hemophilia is RARE, and it's even RARER to have it as a woman. Of course, I turned into a total "groupie" and blurted out that Niki had FVII Deficiency. Naturally, we talked about how rare it is to find other WWBDs. (I've said "rare" a billion times, I know. But, it's true!) Anyway, at the end of our conversation I had to resist the urge to ask her about her period. She was only 23yrs old so I was DYING to know what options her doctors gave her. I maintained my professionalism though and bit my tongue instead.
Despite the fact that I'll be armed with information about sex and managing FVII Deficiency, I'm still nervous about her damn period.
Aunt Flow is already a pain so I can only that hope it's not going to super suck for my baby girl. Even though Niki's period is lightyears away, I still want to be prepared. (Yes, I know, I'm totally type-A.) But....as far as I'm concerned, I'm preparing for a double-whammy when that time finally comes. We're going to have "the talk" and I have to explain to her why she's going to bleed more than her other peers. Most of you already know that I have no problem talking about sex. This obviously means that Niki will be no stranger to age-appropriate sex-stuff and living with a bleeding disorder. But shoot, I'm still a mom and I'm dreading when the day comes!
Maybe things will be different 15 years from now so only time will tell.
I've read that young WWBDs often start taking birth control pills to lighten their periods. I've also heard that periods are tough to deal with. The two women that I met with FVII Deficiency also never had children. I hope the case will be different for Niki. Being the typical father that he is, John thinks that Niki will NEVER date or have sex. Can someone say denial? Nevertheless, it is my hope that my daughter will be "just like everyone else". Sex and all.
Who doesn't want that for their kid?