hello friends, family--it's zak; seeing how the birth announcement email of our baby girl left the NAME in limbo, I feel I should let you all know what we decided: her "real" name is Elise Mae (but we still call her Flossie a lot).
I wish that were the end of the news about Flossie, but it's not. Last thursday Anne was putting a sock on her, and Flossie gave a huge scream-- in exactly the same manner as when Isaac fractured at around the same age-- and we went to the ER. They determined that yes, she did have a fracture in her right femur, but x-rays showed other anomalies as well.
so, monday we had a meeting with some specialists to talk about Osteogenesis Imperfecta.
some of you may know, but Osteogenesis Imperfecta (or OI) is a genetic disease that affects the bones; there's a bunch of different types, each type also having various degrees of severity...we're not real sure what type or severity Flossie might have, but at this stage.... it would be hard to characterize it as a "mild" case; what seems to be sure right now is that she has been fracturing, has some fractures now, and that she will continue to do so for the forseeable future.
we're going to continue to see doctors and specialists for the next while, and will almost certainly know more about what we're dealing with as time goes on.
Some folks with OI see their fractures/ breaks drop off considerably after their teen years, and some aren't able to walk (and just about everything in between); we don't know which this will be, but going too far in either direction doesn't help much either.
we just want to tell everybody that this OI, however it plays out, is a part of our lives now-- and there's things we've got to do for her that's different than a normal infant (how you hold/ move her, etc). but it's just a PART. and part of keeping things normal is just letting all of our friends and family know that it's there.
we've decided to start a blog for Flossie, as a way for those of you who would like to be kept abreast of her condition to be able to keep in the loop, or just to check in on her should you feel the urge. we won't post constantly, but certainly will when there's developments worth sharing.
we want everyone to know what's going on, but at the same time it's still a bit painful to explain her condition every time we tell someone new, so a blog seems like the best way to go.
here's also a site about/ for OI, which has a lot of great info.
http://www.oif.org/
this is scary and difficult, but we're doing okay (but please forgive us if we're kind of distracted or out of it in the next few months-- sometimes this feels kind of overwhelming).
some days are better than others, but we've got a lot of her pain under control. Isaac's being great. we're really happy with the team of doctors that's going to help us get this figured out.
and we've got our friends and family, who are all just awesome.
this isn't all bad news; the good news is, she's a beautiful little girl, who just turned 2 months old. she's got a great smile, and we love her very much.
(also, she's started to coo, which carries its own medicine.)
