Leave the house at 7:15 for an 8:00 appointment. It takes 20 minutes to get there I figure with traffic, since I knew where I was going (I pass "the exit" everyday on my way to the hospital and the directions are simple) and that leaves me time to feed Ollie while we are in the waiting room. Awesome plan that didn't go as awesome as I planned. Apparently there are two exits for Cantrell Rd, 20 minutes apart from each other. No one told me this, I was told take Cantrell, take a left at the light and drive 3 miles and its on the left side. Let me tell you, the directions made sense, I did what they said, until I ended up in the ghetto of downtown, I passed the Salvation Army with lines of homeless people outside waiting to maybe eat breakfast. Surely the genetics office can not be in this part of town. So I called up my friend, who got on Google, trying to figure out where the hell I was and where I needed to be. Turns out I was still 20 minutes away from my appointment. No biggie, get back on the highway, get on highway 630 and go from there. Well, the only place I could figure out how to get back on the highway was the exit AFTER 630. So I just got on the highway after the exit I needed to take, took the next exit and by some crazy ass way, I ended up at the hospital, which was great news because the hospital is off of 630 and I knew my way around there. Somehow I managed to find 630 by totally missing the exit I needed and driving around aimlessly! Eventually I made it to my appointment, so upset I was almost 20 minutes late. We waited 4 months for this appointment, and I was so afraid they wouldn't see us (even though I called to tell them I got lost) or that they would rush us out of there since we were late. I get in, check in, sit in the waiting room and almost right away a nurse comes out to get us and I apologize for being late. Her response "Oh I didn't even realize you were late. We are just ready for you now" REALLY?? I can only laugh I guess.
So, anyways, enough about my wonderful adventure there. The genetics doctors were great. We saw two doctors, we had some serious language barrier struggles going on, but we worked through it, I had them write stuff down when I couldn't understand what they were trying to say, and truth be told, they could have spoken clear English and I still wouldn't have understood the words they were trying to say!! LOL. They think they have an idea what's wrong with Ollie. They are running a panel of test and they should take between 1-8 weeks get all of them back. Hopefully in 2 weeks we will be leaning more towards a definitive diagnosis, and do more testing to narrow it down and hopefully in a few months we will have a true diagnosis. We've waited almost a year to find out what's wrong with Ollie, and now that I know its only a few more months until we know, I just feel like I can't wait that much longer...but we've been waiting 10 months, what's another 3??? Its antagonizing is what it is!!! It makes me sick knowing we are so close to knowing. I just want to know. I have heard the question "what will knowing change?" so many times over the last 10 months that I've been saying "I just want to know what is wrong. I want a real diagnosis, not just a bunch of mystery diagnosis that are part of something bigger that no one can figure out" I want the final piece to that puzzle that's going to pull this all together. I want to know if the outcomes the pulmonologist gave us are realistic or knowing that he has a particular syndrome will change those outcomes. Is there a simple treatment for all of this, or is it worse then expected? We won't know until we get that diagnosis. And as much as I don't want to rush my children's lives away, I want these next few months to hurry up so we can know...
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