Invisible Confetti

I cannot express the relief I feel at this moment...

Each time I sit in the waiting room at a doctors office (for hours on end)...my anxiety level gets higher and higher. Its like waiting for a train that is perpetually delayed. You know you have somewhere to go, something important to do, but you can't get there if the train never comes. My destination is always the same and over the past (almost) 3 years, I have rarely seen it on the horizon. In fact its never guaranteed to even be a scheduled stop along the route.

Where am I always looking to go??? The answer is simple, the town of "Good News" in the state of New York. Its a nice town just on the outskirts of the city of Cornea and Glaucoma.

It has been 7 weeks since Emily was seen last by Dr. Kane and Dr. Zaidman, and I was growing increasingly more nervous about her eye pressure and overall health of her eyes. It had never been longer than 4 weeks in between visits and I began obsessing even more about what her eyes looked like. If something didn't quite seem right, I started to panic. There has been some strange redness under her left eye, which may have always been there but now I am looking more closely at it. I've noticed that eye drifting upwards a little when she is trying to focus on something and sometimes it seems like she isn't able to control it and has to close her eye to bring it back to center. We have been so diligent about the eye drops and ointments, and we're doing everything we are supposed to do. But I always second guess if its enough.

Last week I sat with bated breath as Dr. Kane studied her eyes over and over again. She was such a big girl this time, insisting that she sit in the chair all by herself. She squirmed and wiggled, but overall she did good. It was the first time I'd really been able to see her being examined that way since I'm usually holding her on my lap. It was kind of awe inspiring to see her sitting there, after everything she's been through, helping her doctor hold the button on the light he uses to see into her eyes. After a rather lengthy exam, he announced that she looks really good! Her pressures are 14 (right) and 18 (left), which is without the Xalatan (Glaucoma meds) for 2 days. This meant he was taking her off of it completely! ONE LESS drop each day!!! It might not seem like much, but when she has been on so many different drops and we are now removing one from the list instead of adding one, its a HUGE deal. And a sign that the valve implant was still doing its job, and well.

He once again checked her for glasses but couldn't pin point her exact prescription, so we wait. If he's not pushing for them, then I trust that he doesn't feel its crucial for her to have them right now. There are a variety of reasons why he is having difficulty, including the corneas themselves and the lens implant. She was doing good and we left there with one less medication on the list and an appointment in TWO months! I have arrived at "Good News"....finally.

But this was only one half of my round trip ticket. The next stop was Dr. Zaidman's office a few days later. Here we go again....

While waiting for my connecting train to arrive, I wasn't as anxious because I had already had some positive news under my belt. I went in there with just a hint of a smile on my face, and maybe a little less weight on my shoulders. I knew he would be pleased with the pressure, it was just the matter of the health and clarity of the corneas that were the remaining issues. Once again, little miss Emmy wanted to be a big girl so she sat in the chair all by herself and willingly put her head in the big machine that allows her doctor to more precisely see the cornea and inner workings of her eyes. I was so proud of her! "Everything looks perfect!"

BING! For the moment the nagging and annoying voice of doubt and worry is quiet. It's still there, just not saying much. The remaining weight has been lifted off my shoulders and I feel like I can breathe a little better now. Its amazing what our minds can do to our bodies. We physically feel the effects of our own thoughts and emotions.

Dr. Z also is decreasing the Durezol (steroid drop) from 3 times a day in the Right eye, to 2 times a day...which is a good sign. Now we are at a total of TWO LESS Drops per day! Again, on the outside looking in you might think "so what".....When at one point in time Emmy was getting over 60 eye drops a day...each time you lessen it, its like winning the Super Bowl...invisible confetti floats down around me in the doctors office and there is a ticker tape parade for her on our way down the hospital corridor and out to the parking lot!

I left there with a smile in my heart and again an appointment in TWO months! 6 months ago Emmy needed to be seen twice a week. "I'm gonna miss you guys" Dr. Z said as we headed out of the exam room.

Back on the train headed home...very happy to have been to "Good News" twice in one week. I hope to visit there again at the end of November.

In the meantime, I hope the hospital staff doesn't mind cleaning up all the confetti...

Butterflies

The symbolism of the butterfly is most commonly centered upon its unique transformation. In the beginning, its existence starts out as a crawling caterpillar. It then wraps itself in darkness during the dormant and captive chrysalis phase. And finally, when the transformation is complete, it emerges and is reborn into a beautiful, winged creature who can now spread its wings and fly. In my opinion, that is one of life's most impressive forms of evolution. The amazing metamorphosis of the butterfly is a powerful symbol of change and a reminder of the fragility of life.

"Because of the butterfly's short life span, many ancient peoples saw it as emblematic of the impermanent. It's physical beauty and its fluttering from flower to flower seeking nectar have made it synonymous with the more unstable and superficial aspects of the human soul."

• "Vision is a complicated process that requires numerous components of the human eye and brain to work together. The initial step of this fascinating and powerful sense is carried out in the retina of the eye. Specifically, the photoreceptor neurons (called photoreceptors) in the retina collect the light and send signals to a network of neurons that then generate electrical impulses that go to the brain. The brain then processes those impulses and gives information about what we are seeing. Light that reflects off of objects around us is imaged onto the retina by the lens. The retina, which consists of three layers of neurons (photoreceptor, bipolar and ganglion) is responsible for detecting the light from these images and then causing impulses to be sent to the brain along the optic nerve. The brain decodes these images into information that we know as vision."
  

- Excerpt taken from: "How We See: The First Steps of Human Vision"

When Emily was born, she was blind. Her brain had the ability to gain vision, but but the physical barrier of her clouded corneas prevented any light or images from being sent to the retina.

Like the evolution of a butterfly, Emily underwent her own unique transformation. She began her life just as the caterpillar does...crawling along, full of potential and the inner strength needed to realize that potential. She was living in a world of darkness for so long and endured countless surgeries, her time of captivity and change. Now, she has finally emerged with her eyes wide open, ready to see our world...her beautiful wings, ready to take her wherever she wants to go.

Just as the butterfly was once believed to be a symbol of impermanence, we are reminded everyday that the vision she has gained isn't permanent either. She has already had two transplants in both eyes, due to rejection and re-clouding of the corneas. And we are fighting to prevent the glaucoma from stealing her vision everyday. We will continue the struggle to maintain and improve her vision for the rest of her life. And all we have to hold on to is "Hope".

A couple weeks ago, I decided to forever mark the journey Emily has been through by getting a tattoo in her honor. Everyone gets tattoo's for different reasons, the loss of a loved one, the birth of a child, an emotionally difficult time in their life - or they just like the art. This tattoo is very personal and holds an unimaginable amount of emotion in it. The pain of actually getting the tattoo is so minimal compared to the physical pain Emily has been through and the emotional pain I have endured as her mother. But we are hoping the worst is behind us and from here on out we can smile and look on with amazement with how far Emily has come in her short and precious lifetime.

Fly...spread your wings Emily, and fly! Fly wherever the wind will take you, and know that wherever you land, Mommy and Daddy will always be by your side.