Thursday, March 5, 2009

I called UAB the other day to see what I will need to bring with me for Kale's appointment on Monday. I was told that I should have received something in the mail to fill out and mail back in. When I told the person that we had never received anything like that, she put me through to the lady who was in charge of mailing the paperwork out. Of course, I got her voice mail. And of course, she never called me back. So the next day (yesterday), I called that lady again and finally got her on the phone. Turns out she never sent it out. Something about being busy and out sick. Hmmmm. For the past five months? Whatever. Anyway, she said the paperwork was just stuff to fill out to save time and suggested that we just come to the appointment early to fill it all out. The paperwork that should have been sent to us included forms for us to authorize the release of Kale's medical records. So basically, without them having those forms beforehand, I will have to fill them out when I get there. And they won't even have any of his records or information on hand and the appointment will just be a big waste of time for everyone involved.

So today, I called Kale's pediatrician and also Sacred Heart Hospital's medical records department. I was able to get Kale's MRI report from his ped. along with a bunch of other important papers. Tomorrow I have to go to the hospital and request the records I need. I was told that I would be able to get everything that same day. I am going to try my hardest to get them to put the actual MRI onto a disc (my mom said they can do this). Here's why.

The MRI report that I got today? Says Kale has right microphthalmia. Not bilateral. It says that his left eye (which we've already deemed his "good eye") appears to be normal. And that is stated a number of times on that report and on some other diagnosis report. Then there's Dr. Redmond's diagnosis, which says Kale has severe bilateral microphthalmia. I think I've mentioned before that I found similar information on some paperwork that we have. What the hell???

We've always questioned Dr. Redmond's diagnosis and prognosis (which was that Kale is completely blind) because as Kale's parents, we witness every single day how our son reacts to everything. Any of you who have ever been around Kale, especially recently know what we mean when we say Kale "sees something" through that left eye, even if it is fused shut right now. You see the way he seems to be "looking for something". We definitely know he has light perception (big time) but it honestly seems like he sees more than that. Shadows, maybe? We don't know and won't know until he can tell us himself.

We hate to get our hopes up with this appointment coming up because it seems every time we do, we get bad news. Or we get no news. But hopefully this Dr. Cogen we're going to go see on Monday will take a look at the MRI and wonder what the hell Dr. Redmond was talking about. Or he'll schedule to have another one done. Or he'll see that Kale "sees". There has to be something good that will come of this appointment. Just the possibility that Kale might one day see his family that loves him so much...I can't even contain myself with that thought.

Ugh! Monday, just hurry up and get here already!


Blair said...

Wow, that is major stuff. I am sure you will be in good hands at UAB and I hope you will get some of the answers that you need. I will be thinking about you next week when you make your trip!

Heather BT said...

Good luck with the trip, I hope you get some definitive answers. I think the not knowing is the hardest part. We have to live with the results, whatever they are, but it's sure nice to know .
Heather BT