I'll be the first one to admit that its been too many years since I've posted to this blog. I might be able to offer some excuses, ranging from "not enough time" to "if I don't talk about it, its not real". I wish I would have continued to write about everything that has happened since I last posted, but my excuses and reasons for not doing so are complicated. And that's a topic for another post all together.
In summary, alot has happened since I posted in 2015...a 3rd cornea transplant in Emily's right eye, lightning fast progression of the cataract in her right eye, Cataract surgery and the return of the evil's of Glaucoma. The last of which has brought me to right now, back to writing.
Since the trabecalectomy surgery many years ago, the glaucoma in her right eye had been controlled by the new drainage path and did not require any medication to keep it at a normal level. After she had cataract surgery in March of 2017, she has had to maintain a low eye pressure by using the Timolol eye drops again. It had been under control, usually ranging from 16-18 until we were at a routine follow up appointment with Dr. Zaidman in October of last year (2018). That day, her pressure was 24 and it raised some concerns, so we made an appointment with Dr. Kane to grasp a better understanding of what was going on. In Nov. of 2018, Dr. Kane said her pressure was about 16 and the cause of the elevated number in Oct. could have been due to her eye drops not being absorbed well enough that day. We made an appointment for 3-4 months later to check on the pressure, which brought us to last Wednesday.
Feb. 27, 2019 - Waking up at 5am to be at Dr. Kane's office promptly at 9 seemed daunting to me, but as I was listening to the 1010 wins traffic report I was glad to not be going into the city today. Some kind of major traffic was causing a 90 minute delay on the GWB and I was ever so grateful to be getting off Rt. 80/95 at the exit for Teaneck. Having the first appointment of the day, we were 30 minutes early so we stayed in the car until just before 9. The office door was locked and Dr. Kane arrived about 10 minutes after we did, unlocking the door to let us in. We still waited 15 minutes in the waiting room before he called us back. I was annoyed because its at least an hour drive home and I had to be at work by 11:00...time was ticking. I beat the doctor to the office and I still had to wait....ugh.
Once back in the room, I had hoped to hear some good news about her pressure and be on our way. But I've been down this road too many times and when something takes a heartbeat longer than usual, it means something is wrong. I wanted to throw up, my insides were turning inside out and tears pricked at the corner of my eyes. He hadn't even said a word yet, but I knew what was coming. He looked in her eye too many times, took longer than he ever has before to try and get her to look in one direction so he could look closely. He went back to his notes, searching for something I couldn't bring myself to ask about. He took her pressure 2 more times, just to be sure. And even after looking at her chart, flipping back to pages that must have dated back to countless appointments ago, he still didn't seem to find the answer he was hoping to find.
"I don't think the glaucoma is being managed right now"...he said, implying that her pressure was elevated. "How high is it?' I asked...."23/24" he replied. Ok I thought, we can adjust her medication, change it, add something...we've been here before and we can fix this. But then he added as he was still looking at her chart, "I'm noticing a change to her optic nerve". Me....silence. I was frozen. There weren't any words that I could find in that moment that would have been sufficient. My mind immediately went to a place that I had hoped we would never have to visit...is this the beginning of the end for her vision? Seconds ticked by, but it felt like I was silent for hours. Finally I asked "How much of a change do you see"? His answer was nothing short of a typical doctors response, you know, just enough information to let you know there is a problem, but not enough to tell you exactly how bad he thinks it is. "Enough of a change for it to catch my eye and notice a difference", he said, adding that he doesn't think it has affected her vision yet. There. There is the dark place, no pun intended, that I have been trying to avoid since the day Emily was born. In the 11+ years that I have been fighting for Emily's vision, I have learned that there are many, many things that can steal someones eyesight. And most of them can be treated and managed,with medication or surgery, in order to preserve or restore vision. The single most irreversible thing that will steal someone's eyesight, is damage to the optic nerve. We've navigated this far through multiple (6 total) cornea transplants, countless glaucoma surgeries including up to 3 valves in each eye, cataracts in both eyes, corneal ulcers and scratches, scar tissue removal and a detached retina that could not be repaired, leaving her with only vision in one eye. When she lost her sight in her left eye, it was a devastating loss. Her world changed, but she remained strong and her right eye compensated for the loss. The right eye has always been the stronger one, but has not been free of complications by any means. But this...optic nerve damage? WHY??? Why after all this time, after how hard she has fought to overcome all the odds against her to maintain functional vision, why is this happening???
My heart was breaking, but I had to remain calm and positive because I didn't want Emily to sense there was something more wrong than there was. It's a fine line that I have to walk when it comes to sharing with her the reality of what things mean. She understands so much now, but at the same time is still only 11, and 11 year olds don't need anxiety and stress like this. So I took a deep breath and put on my brave mom face, I may have perfected it by now. Dr. Kane changed her eye drops to Cosopt and said that he wanted to see her back "in the very near future" so he can take another look at her optic nerve and see whats going on. We made an appointment to come back in 2 weeks. I wiped tears away as I drove back up Rt. 80 towards home with the words "not affecting her vision yet" on repeat in my head.
Two days later, Emily's AMAZING Language Arts teacher returned from a medical leave and I filled her in on what was happening. The following Monday she reported to me that there was a change in the way Emily was able to see some flash cards with words and letters on it. She had not ever had a problem with them in the past, but that day she struggled. I immediately let her visual therapist know of the events from the doctors appointment and the new information from her teacher and she was going to do a Functional Vision Assessment when she saw her this morning.
This afternoon, I received a message from Terry stating that "compared to last years assessment, there was a definite decrease in both her near acuity and distance acuity". BOOM...the optic nerve damage IS affecting her vision. Devastation ran rampant through my heart and mind, I tried to keep up a brave front, but eventually the tears wouldn't stay hidden.
I will know more information once I speak with her tomorrow morning, but I can't help but go to that dark place in my mind...is this the beginning of the end? I sat in my car before leaving work and cried, letting out all the bravery I had tried to hold in. THIS ISN'T FAIR.
I'm scared for her. Scared for what this means for her future, for the rest of her life. If the glaucoma and subsequent optic nerve damage steals her vision, her world as she knows it will be gone forever.
Just as we asked the day she was born...WHY? Why is this happening?? Sadly, we will never have an answer.
Years ago I started making a visual bucket list, things I want her to see before its too late...now, time is ticking.
