So yesterday was Kale's big appointment. We arrived at the Callahan Eye Foundation Hospital about an hour and a half earlier than our appointment was scheduled, but we were fine with waiting. We just wanted to get there early enough to fill out any paperwork we needed to and to hand over all the films, reports and records we brought with us so Dr. Cogen would have enough time to look over everything (assuming he would). Surprisingly, we actually were seen right away.
My parents went with us and stayed with Maile in the waiting area while Mike and I took Kale into the exam room with Dr. Cogen. After looking at the films from Kale's MRI he had shortly after he was born, he explained to us that even though Kale's left eye appeared to be normal in size, it was in fact misshapen and not the size it should have been at birth (the right eye is definitely severely microphthalmic and there is no vision there whatsoever, but we already knew that). He pointed out to us in the films where it was rigid and underdeveloped and said that if there was any vision, then it should have been looked at between two and three months of age. After three months of age with no type of visual therapies or whatever (I can't remember exactly what he said, and I'm trying my hardest to explain it) it's pretty much a lost cause. He used the term "use it or lose it" a lot, but not in a negative way. I think what he was meaning to say was if Kale had any type of vision in his left eye, it needed to be dealt with during that time frame. But since it wasn't, that window of opportunity is pretty much long gone.
Yeah. So I was pissed and started to cry. All I kept thinking was that Dr. Redmond here in Pensacola never explained any of this to us. He saw us for five minutes in the NICU just to tell us that he had bilateral microphthalmia and no hope for functional vision. And that he may not even have an eye on the left side, it could just be tissue. And he'll see Kale again in April when he's seven months old for a follow up. What the hell.
Dr. Cogen explained to us that the chances of Kale having any type of vision aside from light perception were slim. I get that. But even if it was just one tiny percent possible, I think we should have been given that option to find out. To do what we could for Kale. Despite our being hopeful, we have prepared ourselves from the beginning with the idea that Kale will never see. But you can do that all day long and still be crushed when you're told that there was the option to know for sure and now you'll never know at all. I hate that Dr. Redmond has taken that away from Kale. I know one day I'll be able to shake it off, but right now it just frustrates me to no end. It's all still so new to us and there is nothing worse than feeling helpless when it comes to your children.
Ok. On with the appointment. Dr. Cogen brought in Dr. Scruggs who works in Ophthalmic Plastic and Reconstructive Surgery. She and Dr. Cogen are going to perform what they called an "exploratory surgery" on Kale next month. They are going to surgically open his eyes and check things out and see what's going on under his lids. Dr. Cogen tried to open his eyes himself and look but couldn't see much. Kale did not like that one bit. They then had an ultrasound done on his eyes. The u/s was just like any other u/s you'd have, just done on the eyes. Kale didn't like that either. Dr. Cogen did say though that the u/s pic on Kale's left eye looks a lot better than the MRI. He said the u/s showed that his eye is better shaped and more rounded than the film he saw earlier. But he also said that just because the outer shell of an eye looks good, the inside could still be a different story. But they'll know more once they do the surgery.
They then sent us down to another floor to see Dr. Cox who is an ocularist-a health professional who specializes in prosthetic devices for the eye. He wanted to see if he could fit Kale with conformers (which help to support the growth of the eye socket and the bones of the face. They are used to expand the orbit and the opening of the eyelid). I knew this wasn't gonna work, but let him try anyway. I was right. It didn't work. It just had Kale screaming for the third time in about an hour. Nice.
So now it seems that Dr. Cox will be present at the surgery so that he can go ahead and fit Kale's conformers in after they open his eyes up. After that we'll have to go back every six weeks for adjustments as he grows. I hate to say it, but I don't really know much more right now about the surgery. I don't know if it's outpatient or inpatient or how long his recovery time will be. I'm nervous about it, though. That much I do know. I know he needs it, but it's still scary to think that my baby boy is going to have to go through this. And from what Dr. Scruggs mentioned, it may not be the last time. Anyway, we should be getting more info in the next couple of weeks and then I'll update on that.
I guess it's good that the ball is finally rolling but I'm still upset that we had to wait this long. Everything that I have read these past five months has said that it's important for a baby with anophthalmia/microphthalmia to be seen on a regular basis by an ophthalmologist and ocularist. But Dr. Redmond didn't want to see him until after he was six months of age. And when I called UAB back in October to set up an appointment, the lady I spoke to told me that they wouldn't see him until he was about six months of age. The reason why doesn't seem to coincide with anything Dr. Cogen said to us. I'm kind of confused, but of course I didn't think about any of this while we were there with him. Isn't that how it always goes, though?
I'm done for now.