The Marathon

The only bittersweet part to the past few weeks is that since we got the diagnosis of the omphalocele back in October, I had pictured getting through everything - the end of the pregnancy with all of the tests and stressful appointments, labor, delivery, the surgery, the NICU stay - as a marathon with finish line being when we would get to bring her home and everything would be ok.  But getting the KTS diagnosis has felt like someone telling us we have another 26.2 to go-  all slightly uphill.  In addition to her current symptoms, there is a whole list of potential problems and side effects so we've been going to specialists all over San Diego County to rule out other potential problems, some of which are very scary. This alone has been hard because instead of me having to go through the painful tests and exams, we've had to watch our little girl be subjected to more poking and prodding. They plan of action (our only choice at this point) is to start a series of treatments on her legs in the coming months - at least 6 treatments that will all require that she be put under general anesthesia.  Finding this out was heartbreaking to me knowing that we'd already gone through that and that it was something we never thought would have to happen again, but we know its our only option and we'll do anything to make sure she gets the best care possible.

But randomly while doing some research about Carlsbad for a social studies project (not my own obviously) I stumbled across one of it's notable residences info and discovered that pro snowboarder Shaun White had two open heart surgeries before the age of one- and he seems to be doing just fine. In some weird way it made me feel better to know that it really can work out ok. And that she'll probably be in the Olympics some day and they'll write a wikipedia page about her. So for now we're hoping for the best and clearing a spot for her gold medal:)