As I glance back into the “sound asleep” portion of our hotel room at my sleeping little girl and wife, I’m struck by just how long of a day this has been.
Like I said in an earlier post, Katy’s allergies were bugging her the whole way up here and have continued through today. This morning, at 4 am, Katy went into a coughing fit that woke all of us up and that was pretty much it for sleep. We had to be up around 5 am anyway to be at our check-in time of 6:35 am. Katy sure as heck didn’t want to go back to sleep, so a 4 am wake-up call it was.
Our first appointment was with the genetic department. Our first news of this trip is a new karyotype for Katy. Her deletion is actually bigger than we thought and runs from 6q12-to-q14.2. (We had been told previously it was 6q13-14.1.) Not exactly the most encouraging news to start with, but, hey, that’s what we came here for. I’ll post much more on our experience here after I’ve had a chance to soak all of this in, but our first full day of appointments have made it very clear that we will not find some magic pill that will give us all the answers we’re seeking. We’ve had to come to grips today with the simple fact that those answers don’t exist. That’s a difficult thing for Shel and I to accept, but it’s not something we can dwell on. No matter what doctors tell us, in the end, it’s still up to us to raise Katy and help her to develop into whatever type of woman she will become.
What made today significant for me was something I’ve written about before in this blog: I don’t expect any of our doctors to have answers for Katy’s problems – her issues are just too rare. What I’m looking for are doctors who are truly interested in my daughter. I’m looking for doctors who see more than just the symptoms in front of us that relate to his/her specialty. Simply put, I’m looking for doctors who give a damn about the patient – not just the problems. Today was a good day as far as that went. Every doctor we spoke to was genuinely interested in Katy and wanted to help as much as they could. (I can’t say the same about the lady who ended up having to do Katy’s electrocardiogram after she had stated to the front desk personnel: “I’m not doing a test on a kid” without realizing that said “kid’s” Mom was right there even if “kid” was out in the hallway with Daddy.)
Like I said, today has been a long day, made even longer because Katy has an EEG tomorrow morning at 7:30 am. For some reason, they scheduled a test that Katy needs to be sleeping for at 7:30 am. So, despite the fact that she woke up at 4 am, we’ve now kept her up past 9 pm down in the swimming pool with the hope that she may actually be tired enough to go back to sleep at 7:30 after we wake her up at 5 am tomorrow, as well. If not, they have to giver her a “mild” sedative to perform the test. I have serious reservations about how much “fun” tomorrow will be if Katy is sedated at the very beginning of another full day of tests and appointments.
Thanks for checking in with us. I know many of you were hoping along with us that we might find some answers up here. Turns out, we may just have to find some different questions.
todd