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...
Wednesday, September 29, 2010
Sunday, September 19, 2010
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.
Tuesday, August 31, 2010
Revive Hope
I recently discovered an amazing blog that chronicles the lives of Organ/Tissue Donors and Recipients. Please check it out and help spread the word about how important it is to "Live Life and then Give Life"
http://revivehope.typepad.com/
http://revivehope.typepad.com/
Monday, August 30, 2010
Cautiously Using The Word "Stable"
For almost 3 years we have been on this insane roller coaster, never knowing if we would ever get a chance to slow down and enjoy watching our daughter be a little girl. Would her childhood be dominated by long car rides, doctors waiting rooms and hospital visits? Or would she get a chance to just be a "normal" child. To be completely honest, in the days and weeks after her birth, I envisioned Emily as a blind child who struggled to live with her disability...Wow was I wrong!
Our little girl is now almost 3 years old and she can do just about anything any normal sighted child can do. She has some limitations, and hesitates when she isn't sure about something, but 95% of the time she is a normal child. She CAN kick a ball around in the yard, play in the sandbox, ride a scooter, jump into a swimming pool, chase seagulls on the beach, swing on a swing, play miniature golf, ride a carousel, color with crayons and chalk (and know the colors she is using) climb up and down steps without help, play with dolls, watch TV, look at books and name the pictures she sees, tell the difference between a panda bear and a brown bear...the list goes on and on. She can do ALL of those things!
She loves watching fish swim around in a fish tank, building with LEGO's and giving our kitty cat hugs. She knows the difference between orange and pink...blue and purple...red and yellow. EMILY CAN SEE! ! ! She is NOT blind anymore! The quality of her vision may not be "perfect" but neither is mine. I wear contacts, my husband does too - who knows...she may see better than either one of us does without glasses or contacts. She is simply amazing!
At our last appointments with all her doctors, they were all extremely happy with how she is doing. Her corneas are very clear (with the exception of the scarring in the center of her left eye). Dr. Zaidman reduced the Durezol (steroid drops) to 3 times a day in the Right eye and once a day in the left. (It had previously been 8 times per day in each eye at one point). She is still on 3 different Glaucoma meds, but her pressure has been within a good range consistently for the past few months and Dr. Kane is considering eliminating one of them. Dr. Morgan was so impressed with her vision at her visit a couple weeks ago. She is still farsighted, but her vision at a close range doesn't seem to be interfering with her daily life, so the need for glasses is questionable. They could help make her see things that are close less blurry, but it may not be significant at this point. We are holding off for a little while and will wait to see how things go over the next few months. No glasses and less eye drops! THAT is a wonderful thing!
Because of the decrease in meds and good range for her eye pressure, I've cautiously began to describe her as "Stable" when someone asks me how she is doing. Anything is possible, so I can't really subscribe to the idea that for the long term she is ok, but for the past few months and at this very moment...she is as stable as she can possibly be. That roller coaster has slowed down, our doctors visits have been decreased from once a week (right after the cornea transplants) to every 7-8 weeks. And when she goes back at the end of September, the appointments could be spread out even longer.
She is doing well, and I can't ask for more than that. Her eye drop schedule is just routine now...its not as consuming as it once was. Its just part of our daily life. She gets 7 different meds at various times of day, but there is flexibility now. I am not looking at the clock and saying "oh my god, I didn't give her drops at 9:47 like I needed to". Giving them at 10 or 11:00 is fine. Two years ago I never envisioned I would feel that way.
Living By Hope has worked for us so far...
Our little girl is now almost 3 years old and she can do just about anything any normal sighted child can do. She has some limitations, and hesitates when she isn't sure about something, but 95% of the time she is a normal child. She CAN kick a ball around in the yard, play in the sandbox, ride a scooter, jump into a swimming pool, chase seagulls on the beach, swing on a swing, play miniature golf, ride a carousel, color with crayons and chalk (and know the colors she is using) climb up and down steps without help, play with dolls, watch TV, look at books and name the pictures she sees, tell the difference between a panda bear and a brown bear...the list goes on and on. She can do ALL of those things!
She loves watching fish swim around in a fish tank, building with LEGO's and giving our kitty cat hugs. She knows the difference between orange and pink...blue and purple...red and yellow. EMILY CAN SEE! ! ! She is NOT blind anymore! The quality of her vision may not be "perfect" but neither is mine. I wear contacts, my husband does too - who knows...she may see better than either one of us does without glasses or contacts. She is simply amazing!
At our last appointments with all her doctors, they were all extremely happy with how she is doing. Her corneas are very clear (with the exception of the scarring in the center of her left eye). Dr. Zaidman reduced the Durezol (steroid drops) to 3 times a day in the Right eye and once a day in the left. (It had previously been 8 times per day in each eye at one point). She is still on 3 different Glaucoma meds, but her pressure has been within a good range consistently for the past few months and Dr. Kane is considering eliminating one of them. Dr. Morgan was so impressed with her vision at her visit a couple weeks ago. She is still farsighted, but her vision at a close range doesn't seem to be interfering with her daily life, so the need for glasses is questionable. They could help make her see things that are close less blurry, but it may not be significant at this point. We are holding off for a little while and will wait to see how things go over the next few months. No glasses and less eye drops! THAT is a wonderful thing!
Because of the decrease in meds and good range for her eye pressure, I've cautiously began to describe her as "Stable" when someone asks me how she is doing. Anything is possible, so I can't really subscribe to the idea that for the long term she is ok, but for the past few months and at this very moment...she is as stable as she can possibly be. That roller coaster has slowed down, our doctors visits have been decreased from once a week (right after the cornea transplants) to every 7-8 weeks. And when she goes back at the end of September, the appointments could be spread out even longer.
She is doing well, and I can't ask for more than that. Her eye drop schedule is just routine now...its not as consuming as it once was. Its just part of our daily life. She gets 7 different meds at various times of day, but there is flexibility now. I am not looking at the clock and saying "oh my god, I didn't give her drops at 9:47 like I needed to". Giving them at 10 or 11:00 is fine. Two years ago I never envisioned I would feel that way.
Living By Hope has worked for us so far...
Tuesday, April 27, 2010
When Do You Stop Looking Back?
In a previous post I mentioned that I had recently found a photo of Emily when she was born and all the pain and emotions came flooding back to me. It was hard to think back and almost relive those moments...although the chain of events that followed Emilys birth can't be changed, when is it ok to stop looking back on them with sadness? When will I be able to appreciate what we have been through and embrace how far Emily has come without feeling sad that she had to go through it in the first place? I sometimes find myself still feeling the envy of parents who welcomed a perfectly healthy baby into this world, wondering how different my life would be without Emily's disability weighing on my shoulders everyday. How do I stop looking at that beautiful baby in the supermarket who has the most clear and bright blue eyes and wishing that Emily looked like that? I don't want to go through life wishing it was different. I want to enjoy the life that God has given us and be thankful for the medical miracles that have given her the ability to see.
How do you let go of feelings that are so deeply rooted in your heart? When can you stop looking back on the events of your life and wish something were different? If those events had never happened, your life would not be what it is today...is that what you really want? Is that what I want? Do I wish that Emmy was born with perfectly healthy eyes? Of course I do, but she wasn't and I can't change that. Again....how do I stop looking at that baby in the store and feel the familiar pang of jealously? Why was my daughter born with this condition and that baby wasn't? Ask anyone who has ever been dealt a shitty hand in life and they will tell you the same thing...everyone wishes the shitty hand was dealt to someone else.
I am feeling kind of down and out lately. Nothing seems to make sense and when I think I've figured it all out, someone or something blatantly tells me I'm wrong. No one has life figured out, its a mystery to all of us. Just when I feel like things are going well or have reached that "stable" status...someone flips a coin and turns things upside down. Why is it that when you have a good thing going for you, it can't just continue to be good? Its never good for long enough, you're happy for a day or two, then BAM! Someone rips your heart out of your chest without any warning or explanation. Can we at least get an expiration date on our happiness so we can prepare for when its going to go sour? "Good things always come to an end" - I hate that phrase. It's so depressing. Who wants to live their life thinking that every good thing they've got going for them is at some point just going to fall apart? If that were the case the entire world should be on anti depressants.
How do you let go of feelings that are so deeply rooted in your heart? When can you stop looking back on the events of your life and wish something were different? If those events had never happened, your life would not be what it is today...is that what you really want? Is that what I want? Do I wish that Emmy was born with perfectly healthy eyes? Of course I do, but she wasn't and I can't change that. Again....how do I stop looking at that baby in the store and feel the familiar pang of jealously? Why was my daughter born with this condition and that baby wasn't? Ask anyone who has ever been dealt a shitty hand in life and they will tell you the same thing...everyone wishes the shitty hand was dealt to someone else.
I am feeling kind of down and out lately. Nothing seems to make sense and when I think I've figured it all out, someone or something blatantly tells me I'm wrong. No one has life figured out, its a mystery to all of us. Just when I feel like things are going well or have reached that "stable" status...someone flips a coin and turns things upside down. Why is it that when you have a good thing going for you, it can't just continue to be good? Its never good for long enough, you're happy for a day or two, then BAM! Someone rips your heart out of your chest without any warning or explanation. Can we at least get an expiration date on our happiness so we can prepare for when its going to go sour? "Good things always come to an end" - I hate that phrase. It's so depressing. Who wants to live their life thinking that every good thing they've got going for them is at some point just going to fall apart? If that were the case the entire world should be on anti depressants.
Saturday, April 24, 2010
Barely Holding On
There are good days and bad days....on the bad days I feel like I am just barely holding on...
"I'm falling apart
I'm barely breathing
With a broken heart
That's still beating
In the pain
There is healing
In your name
I find meaning
So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you"
~Lifehouse
"I'm falling apart
I'm barely breathing
With a broken heart
That's still beating
In the pain
There is healing
In your name
I find meaning
So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you"
~Lifehouse
Possibilities
This post is totally off topic....sort of.
It seems cliche to use the phrase "when one door closes, another one opens", but its true. In the last year I have been inspired to do something I love and fill a void in my life that has been around for many years. Writing is a passion, something you need to live for in order to be successful at. My passion has been buried underneath diapers, sippy cups and endless loads of laundry for the last 7 years. I needed to uncover it, it was suffocating and needed to breathe the light of day again.
Opportunities only knock once, and if you don't open the door you'll never know what you might have missed. For years I've had aspirations and dreams about what I wanted to do but had no idea where to start. I needed a source of inspiration. I needed guidance and feedback from someone who knew and understood where I was coming from, both from a creative perspective and personal experience. Completely out of the blue, I was approached by someone who fit those credentials and suddenly an opportunity landed in my lap. A collaboration of thoughts, ideas, creativity and experiences was the spring board I needed to get the gears turning and my fingers typing. I was back in my element, finally after so many years of feeling like something was missing...I started to feel like I had a purpose again. Sadly, there were too many logistical and personal roadblocks that prevented that project from really getting off the ground. It's really unfortunate because something great could have come from that. The book was closed before we could even write the preface...That door was not only slammed shut, but locked up tight...
My spirit was broken and my enthusiasm had diminished.
Many months have gone by and very little has been written during that time. Lately I've had that nagging voice yelling at me, telling me I need to refocus, regroup and start writing again.
Cue knock from door #2...
Today, I met someone who shares my passion and can hopefully help get me back on track. There are possibilities on the horizon and I am once again standing on the edge of my future. I am re-committing myself to pursuing this and turning those dreams of mine into a reality. This time the only thing standing in my way is myself.
This door is wide open! Bring it on!
It seems cliche to use the phrase "when one door closes, another one opens", but its true. In the last year I have been inspired to do something I love and fill a void in my life that has been around for many years. Writing is a passion, something you need to live for in order to be successful at. My passion has been buried underneath diapers, sippy cups and endless loads of laundry for the last 7 years. I needed to uncover it, it was suffocating and needed to breathe the light of day again.
Opportunities only knock once, and if you don't open the door you'll never know what you might have missed. For years I've had aspirations and dreams about what I wanted to do but had no idea where to start. I needed a source of inspiration. I needed guidance and feedback from someone who knew and understood where I was coming from, both from a creative perspective and personal experience. Completely out of the blue, I was approached by someone who fit those credentials and suddenly an opportunity landed in my lap. A collaboration of thoughts, ideas, creativity and experiences was the spring board I needed to get the gears turning and my fingers typing. I was back in my element, finally after so many years of feeling like something was missing...I started to feel like I had a purpose again. Sadly, there were too many logistical and personal roadblocks that prevented that project from really getting off the ground. It's really unfortunate because something great could have come from that. The book was closed before we could even write the preface...That door was not only slammed shut, but locked up tight...
My spirit was broken and my enthusiasm had diminished.
Many months have gone by and very little has been written during that time. Lately I've had that nagging voice yelling at me, telling me I need to refocus, regroup and start writing again.
Cue knock from door #2...
Today, I met someone who shares my passion and can hopefully help get me back on track. There are possibilities on the horizon and I am once again standing on the edge of my future. I am re-committing myself to pursuing this and turning those dreams of mine into a reality. This time the only thing standing in my way is myself.
This door is wide open! Bring it on!
Thursday, April 22, 2010
Two Surgeries in Two Weeks
My daughter is amazing. It is as simple and complex as that.
Back in February, Emily had a partial Tarsorrhaphy (see link below) and a repeat corneal transplant in her right eye, within 2 weeks of each other.
http://http//www.surgeryencyclopedia.com/St-Wr/Tarsorrhaphy.html
The surgery that I wanted to postpone (and did) ended up being something she really needed done in order to protect her cornea and allow the scratch to heal. Her eye was so dry, even with rewetting drops, and there really was no other option. If all the doctors agreed it was necessary, then I had to trust them. I was reassured that this, despite what Dr. Bortz told me, was NOT a permanent stitch. It can, and will, come out at some point in a few months. I didn't know what to expect when the procedure was over, and I was heartbroken to see my little girl look so different. My biggest concern was that now her eye condition was very noticeable and her, for lack of a better word - disfigured eyelid was going to draw attention to it. I didn't want her to look any different that she already did. Most people look at her and see there is something not quite right with her eyes, but when a facial disfigurement is prominent people STARE. I don't want her to go thru life being stared at, made fun of or pointed at. She has enough struggles ahead of her, why did she need to have this added to the list? When I saw her for the first time in the recovery room, my heart sank and I cried. I have tried to be so strong thru all of this and at that moment I was in a million pieces, I'm surprised the nurses didn't hear my heart shattering as it hit the floor.
The procedure allowed her cornea to begin healing within 48 hours, which was great...until we started noticing a grayish white area beginning to form in the center of her left eye...her GOOD eye. It was indeed what I suspected it was...a scar. Can you hear my heart cracking? Because once again it was about to be broken. WHY??? This was her good eye, the cornea that is/was doing fantastically, the one that she can see best with! Can't this poor little girl catch any kind of break? Give her a fighting chance for cryin out loud! A scar...gee I've heard that before. This is exactly what happened to her right eye back in Oct. of 2008 when she scratched that eye and scar tissue formed. That in fact is the reason she is getting another transplant in that eye. And now we have to same problem in her left. What the hell?????
NOTHING we can do about it, except hope it will fade over time.
The doctors don't think it's interfering with her field of vision, despite it being close to the center of her cornea. I hope not, she is seeing so well right now and she can't afford to start losing it. Deep Breath....Throwing my hands up in the air...what can I do? Just love her and have faith....keep hope alive.
On February 25th, in the middle of the biggest snow storm/blizzard NJ has seen in years...Emily successfully had her right cornea transplant surgery. We had to stay in a hotel by the hospital for 2 days because over 2 feet of snow fell in our area. It was an experience that's for sure. Just hours after the surgery, Emily was eating french fries and watching Mickey Mouse on our laptop in the hotel room, eye bandaged and all. This was surgery #17 for her... and when we took the bandage off the next day, Emilys whole world changed. THIS was the best she has EVER been able to see! Two healthy, clear corneas! (scarring excluded)
Much to the amazement of her doctors, therapists, friends and family alike, she is doing GREAT! We are now almost 2 months out from the surgery and her vision has definitely improved. She recently saw Dr. Morgan, her regular ophthalmologist, and she is still nearsighted, but it isn't enough to warrant glasses at this time. She is doing fantastic without them. In the words of Dr. Morgan "If I didn't see it, I wouldn't believe it. She is one of the best cases of transplant surgery I have ever seen, seriously I am amazed at how well she is seeing". Now THAT was music to my ears! You couldn't stop me from smiling that day!
She is still having some problems with differentiating between light and shaded areas outside, going from a sunny area to a shaded area she is not sure if there is a height difference. She steps big over the edge of the shadow as if she were stepping down off of a step. When she tries to navigate some areas in the yard, such as a bare spot in our yard, she asks for my hand to cross it. And when she goes down the steps in the front of the house, she can't really see the edge of the step because its the same color as the next one. She is cautious because she isn't sure how to interpret what she's seeing. Hopefully as she gets older and knows what these things are and learns how to navigate them, she won't hesitate as much. We just try to encourage her that she is ok and she can do it on her own. Most of the time we end up holding her hand, but she is still learning so that should change now that we'll be outside alot more. She didn't like the snow in the winter because I don't think she could see it well. All white snow to her didn't look like anything, she wouldn't even walk in it. We'd put her down and she'd freeze like a statue and just cry. Oh well, hopefully her new snow boots will fit next winter! : )
To all my blog readers who have been waiting for a new update, I apologize for not posting in a while. There has been so much going on in our lives that I haven't had much time to blog. I hope to post some new pictures of Emily from before and after these two surgeries and some of her just being....well...her! : )
She has been such an inspiration to so many people, most of all me. If I am having a bad day or am upset about something relatively insignificant, I look at her and her smile changes everything. She has overcome so much in her short 2.5 years and it makes my little problems seem so petty. She is my sunshine, my beautiful ray of light.
Mommy loves you baby cakes!
Back in February, Emily had a partial Tarsorrhaphy (see link below) and a repeat corneal transplant in her right eye, within 2 weeks of each other.
http://http//www.surgeryencyclopedia.com/St-Wr/Tarsorrhaphy.html
The surgery that I wanted to postpone (and did) ended up being something she really needed done in order to protect her cornea and allow the scratch to heal. Her eye was so dry, even with rewetting drops, and there really was no other option. If all the doctors agreed it was necessary, then I had to trust them. I was reassured that this, despite what Dr. Bortz told me, was NOT a permanent stitch. It can, and will, come out at some point in a few months. I didn't know what to expect when the procedure was over, and I was heartbroken to see my little girl look so different. My biggest concern was that now her eye condition was very noticeable and her, for lack of a better word - disfigured eyelid was going to draw attention to it. I didn't want her to look any different that she already did. Most people look at her and see there is something not quite right with her eyes, but when a facial disfigurement is prominent people STARE. I don't want her to go thru life being stared at, made fun of or pointed at. She has enough struggles ahead of her, why did she need to have this added to the list? When I saw her for the first time in the recovery room, my heart sank and I cried. I have tried to be so strong thru all of this and at that moment I was in a million pieces, I'm surprised the nurses didn't hear my heart shattering as it hit the floor.
The procedure allowed her cornea to begin healing within 48 hours, which was great...until we started noticing a grayish white area beginning to form in the center of her left eye...her GOOD eye. It was indeed what I suspected it was...a scar. Can you hear my heart cracking? Because once again it was about to be broken. WHY??? This was her good eye, the cornea that is/was doing fantastically, the one that she can see best with! Can't this poor little girl catch any kind of break? Give her a fighting chance for cryin out loud! A scar...gee I've heard that before. This is exactly what happened to her right eye back in Oct. of 2008 when she scratched that eye and scar tissue formed. That in fact is the reason she is getting another transplant in that eye. And now we have to same problem in her left. What the hell?????
NOTHING we can do about it, except hope it will fade over time.
The doctors don't think it's interfering with her field of vision, despite it being close to the center of her cornea. I hope not, she is seeing so well right now and she can't afford to start losing it. Deep Breath....Throwing my hands up in the air...what can I do? Just love her and have faith....keep hope alive.
On February 25th, in the middle of the biggest snow storm/blizzard NJ has seen in years...Emily successfully had her right cornea transplant surgery. We had to stay in a hotel by the hospital for 2 days because over 2 feet of snow fell in our area. It was an experience that's for sure. Just hours after the surgery, Emily was eating french fries and watching Mickey Mouse on our laptop in the hotel room, eye bandaged and all. This was surgery #17 for her... and when we took the bandage off the next day, Emilys whole world changed. THIS was the best she has EVER been able to see! Two healthy, clear corneas! (scarring excluded)
Much to the amazement of her doctors, therapists, friends and family alike, she is doing GREAT! We are now almost 2 months out from the surgery and her vision has definitely improved. She recently saw Dr. Morgan, her regular ophthalmologist, and she is still nearsighted, but it isn't enough to warrant glasses at this time. She is doing fantastic without them. In the words of Dr. Morgan "If I didn't see it, I wouldn't believe it. She is one of the best cases of transplant surgery I have ever seen, seriously I am amazed at how well she is seeing". Now THAT was music to my ears! You couldn't stop me from smiling that day!
She is still having some problems with differentiating between light and shaded areas outside, going from a sunny area to a shaded area she is not sure if there is a height difference. She steps big over the edge of the shadow as if she were stepping down off of a step. When she tries to navigate some areas in the yard, such as a bare spot in our yard, she asks for my hand to cross it. And when she goes down the steps in the front of the house, she can't really see the edge of the step because its the same color as the next one. She is cautious because she isn't sure how to interpret what she's seeing. Hopefully as she gets older and knows what these things are and learns how to navigate them, she won't hesitate as much. We just try to encourage her that she is ok and she can do it on her own. Most of the time we end up holding her hand, but she is still learning so that should change now that we'll be outside alot more. She didn't like the snow in the winter because I don't think she could see it well. All white snow to her didn't look like anything, she wouldn't even walk in it. We'd put her down and she'd freeze like a statue and just cry. Oh well, hopefully her new snow boots will fit next winter! : )
To all my blog readers who have been waiting for a new update, I apologize for not posting in a while. There has been so much going on in our lives that I haven't had much time to blog. I hope to post some new pictures of Emily from before and after these two surgeries and some of her just being....well...her! : )
She has been such an inspiration to so many people, most of all me. If I am having a bad day or am upset about something relatively insignificant, I look at her and her smile changes everything. She has overcome so much in her short 2.5 years and it makes my little problems seem so petty. She is my sunshine, my beautiful ray of light.
Mommy loves you baby cakes!
Reminders of How Far We've Come
The other day while cleaning out a box of old papers and junk mail, I came across a photo of Emily when she was just 2 days old. Her eyes were completely clouded over and untouched by the miracle of medicine and science. Her innocence overwhelmed me and all the painful emotions of those first few days came flooding back to me. I sat and cried for a long time.
Thinking back to how her journey and struggle began, reminded me of just how far she has come, how many hurdles she has conquered, how many tears I cried, how many times my heart ached for her.
And here we are now, 2 and 1/2 years later. She is seeing! And seeing WELL! She is doing so much more than I ever imagined she could at this age and I am just in awe of her strength and perseverance. She is my miracle. She is my inspiration. She is amazing!
Thinking back to how her journey and struggle began, reminded me of just how far she has come, how many hurdles she has conquered, how many tears I cried, how many times my heart ached for her.
And here we are now, 2 and 1/2 years later. She is seeing! And seeing WELL! She is doing so much more than I ever imagined she could at this age and I am just in awe of her strength and perseverance. She is my miracle. She is my inspiration. She is amazing!
A Huge Thank You!
A HUGE Thank you to Cheryl, Carlos and all the amazing women at Rumours Hair Salon! On February 28th, they hosted a Cut-a-thon, bakesale and raffle fundraiser for Emily. Everyone donated their time and talent (on their day off) to help Emily fight blindness. There are not enough words to express how thankful our family is for everything they have done for our daughter.
We love them all and their kindness has touched our lives forever!
Thank You to the Knights of Columbus in Kinnelon for hosting a breakfast fundraiser for Emily back in January. The outpouring of love we saw that day was overwhelming and we are so grateful for your care, concern and support you have given Emily!
God Bless You All!
We love them all and their kindness has touched our lives forever!
Thank You to the Knights of Columbus in Kinnelon for hosting a breakfast fundraiser for Emily back in January. The outpouring of love we saw that day was overwhelming and we are so grateful for your care, concern and support you have given Emily!
God Bless You All!
Monday, February 8, 2010
Listening To Your Intuition
I have learned, sometimes the hard way, that you should always trust your gut feeling. Anytime I have gone against it, I end up regretting it.
Right now, my gut is telling me NOT to go through with this surgery. My insides are screaming at me...."Don't do it, This isn't Right For Her".
So here is my internal struggle...Trust the doctors or trust my gut?
Because I was not at the appointment last week, I had some questions that I wanted to ask. And I wanted to talk to the doctor myself. I called today (Monday) and spoke with Dr. Bortz and after our conversation I am not comfortable with him or this procedure at all.
His tone of voice and attitude completely put me off. He actually seemed annoyed that I was asking questions that he had already explained to Jason last week. Sorry Mr. Smarty pants, I wasn't there that day and have never met you. I'd like to know more about the surgery you are supposed to perform on my 2 year old daughter and right now your attitude is not making me feel any better!
One of the biggest concerns is a huge snowstorm that is supposed to start Tuesday night and continue all the way through Wednesday night. 12-18 inches are forcasted for where we live and right now I'm not so sure we are going to be able to make it to the hospital at 6:30 am Wednesday. Seeing as though we live an hour an a half away from the hospital, I asked him what we should do if that happens. His answer was "You need to get a hotel room so you can be close by in order to make it on time. There are a few within 10 minutes of here and are probably not that expensive". Ummmm....ok. What do I do with my other 2 children? I certainly can't bring them with me, or leave them at the hotel. I suppose I could have them spend the night with their grandparents, but they have never had an overnight before so that presents it's own set of problems. I told him that even if we do get a hotel the night before, the storm isn't supposed to end until Wed night, so we might not be able to get home. "Well then you'll just have to stay at the hotel again a second night"...Gee thanks, easy for you to say - are you paying for it? Are you going to take care of our 2 older children? I didn't think so.
"Ok, so if we don't get a hotel the night before and can't make it Wednesday morning, what should we do then?".....In a very condescending tone..."Well that's a decision you need to make right now, because if you don't show up Wednesday morning, we will all be sitting around for an hour and a half doing nothing, and that's not appropriate." EXCUSE ME??? Oh I'm sorry...you mean you won't be making any MONEY! Ahhhh....I see now....the health and safety of your patients aren't as important as your bank roll. Nice.
Aside from the discussion about the snowstorm, I was concerned about the "permanence" of these stitches. Why wasn't this going to be temporary? Any exactly HOW drastic will the change in her appearance be? Again...with a nasty tone in his voice...."Well you are her mother and you control how far I go with this, if you only want her to look a little different, then I will only put as few stitches in as possible. If you want her eye to heal and preserve her vision, then you need to let me do what I need to do". THANKS ASSHOLE, I feel so much better now.
As I got off the phone, I told him I would talk to my husband and let his office know what we decided about rescheduling the surgery on Wed because of the snow.
Now my gut is screaming "This is not the right doctor, This is not the right procedure for her, This is too drastic, too permanent...DON'T DO THIS". How am I supposed to ignore that???
The last time I went against my gut regarding Emily's eyes was when Dr. Kane wanted to take her off of the Iquix completely back in December. After healing from her surgery in November, he didn't feel she needed it anymore. I didn't like that idea since Dr. Zaidman had kept her on it at least once a day in each eye as a preventative of infection after her scratched right cornea back in October of 2008. My inner voice told me that she should still be on it at least once a day, but I trusted Dr. Kane and stopped giving it to her...3 weeks later she had a scratch on both corneas and a bacterial infection in her right eye.
The feeling I have is one of great conflict...am I feeling this way because of how the doctor talked to me? Or was it because all of these things are adding up, creating a wall of doubt about this entire procedure? I was sick the day she was supposed to see Dr. Bortz, a huge snowstorm is forecast for the day of her surgery, the nagging feeling I had from day one that this was too drastic of a solution for her...Were the forces of nature putting up roadblocks?
I cried...a lot. I talked it over with numerous friends and family. Everyone agreed that if I didn't feel comfortable with this doctor or this surgery...don't do it. My last ditch effort to make some sense out of this was to call Dr. Kane and ask his opinion on it all. We spoke for about 20 minutes and after our conversation I felt better. Better in terms of how important it is for Emily to have this surgery, and better about the decision to postpone it and possibly get a second opinion. He agreed to send an email to Dr. Zaidman questioning the timing of things and how soon she really needed to have this done. He also told me that he has done this surgery before and by all means it is NOT permanent. The stitches can be undone at anytime, for any reason. If we don't like the way she looks after her cornea has healed...we can have the stitches taken out. I joked around, half serious though....asking if he could do the surgery. No such luck...oh well.
After speaking to him and talking with Jason, we agreed that going to the extreme measures to get this done on Wednesday wasn't worth it. If it didn't feel right and there was any question about how safe it would be for us to travel in the snow, or costly to pay for a hotel...it just wasn't worth it.
After a very emotionally draining day, I felt better. I was going to be able to sleep tonight knowing that in the morning I was going to call and reschedule the surgery.
I was trusting my gut.
Right now, my gut is telling me NOT to go through with this surgery. My insides are screaming at me...."Don't do it, This isn't Right For Her".
So here is my internal struggle...Trust the doctors or trust my gut?
Because I was not at the appointment last week, I had some questions that I wanted to ask. And I wanted to talk to the doctor myself. I called today (Monday) and spoke with Dr. Bortz and after our conversation I am not comfortable with him or this procedure at all.
His tone of voice and attitude completely put me off. He actually seemed annoyed that I was asking questions that he had already explained to Jason last week. Sorry Mr. Smarty pants, I wasn't there that day and have never met you. I'd like to know more about the surgery you are supposed to perform on my 2 year old daughter and right now your attitude is not making me feel any better!
One of the biggest concerns is a huge snowstorm that is supposed to start Tuesday night and continue all the way through Wednesday night. 12-18 inches are forcasted for where we live and right now I'm not so sure we are going to be able to make it to the hospital at 6:30 am Wednesday. Seeing as though we live an hour an a half away from the hospital, I asked him what we should do if that happens. His answer was "You need to get a hotel room so you can be close by in order to make it on time. There are a few within 10 minutes of here and are probably not that expensive". Ummmm....ok. What do I do with my other 2 children? I certainly can't bring them with me, or leave them at the hotel. I suppose I could have them spend the night with their grandparents, but they have never had an overnight before so that presents it's own set of problems. I told him that even if we do get a hotel the night before, the storm isn't supposed to end until Wed night, so we might not be able to get home. "Well then you'll just have to stay at the hotel again a second night"...Gee thanks, easy for you to say - are you paying for it? Are you going to take care of our 2 older children? I didn't think so.
"Ok, so if we don't get a hotel the night before and can't make it Wednesday morning, what should we do then?".....In a very condescending tone..."Well that's a decision you need to make right now, because if you don't show up Wednesday morning, we will all be sitting around for an hour and a half doing nothing, and that's not appropriate." EXCUSE ME??? Oh I'm sorry...you mean you won't be making any MONEY! Ahhhh....I see now....the health and safety of your patients aren't as important as your bank roll. Nice.
Aside from the discussion about the snowstorm, I was concerned about the "permanence" of these stitches. Why wasn't this going to be temporary? Any exactly HOW drastic will the change in her appearance be? Again...with a nasty tone in his voice...."Well you are her mother and you control how far I go with this, if you only want her to look a little different, then I will only put as few stitches in as possible. If you want her eye to heal and preserve her vision, then you need to let me do what I need to do". THANKS ASSHOLE, I feel so much better now.
As I got off the phone, I told him I would talk to my husband and let his office know what we decided about rescheduling the surgery on Wed because of the snow.
Now my gut is screaming "This is not the right doctor, This is not the right procedure for her, This is too drastic, too permanent...DON'T DO THIS". How am I supposed to ignore that???
The last time I went against my gut regarding Emily's eyes was when Dr. Kane wanted to take her off of the Iquix completely back in December. After healing from her surgery in November, he didn't feel she needed it anymore. I didn't like that idea since Dr. Zaidman had kept her on it at least once a day in each eye as a preventative of infection after her scratched right cornea back in October of 2008. My inner voice told me that she should still be on it at least once a day, but I trusted Dr. Kane and stopped giving it to her...3 weeks later she had a scratch on both corneas and a bacterial infection in her right eye.
The feeling I have is one of great conflict...am I feeling this way because of how the doctor talked to me? Or was it because all of these things are adding up, creating a wall of doubt about this entire procedure? I was sick the day she was supposed to see Dr. Bortz, a huge snowstorm is forecast for the day of her surgery, the nagging feeling I had from day one that this was too drastic of a solution for her...Were the forces of nature putting up roadblocks?
I cried...a lot. I talked it over with numerous friends and family. Everyone agreed that if I didn't feel comfortable with this doctor or this surgery...don't do it. My last ditch effort to make some sense out of this was to call Dr. Kane and ask his opinion on it all. We spoke for about 20 minutes and after our conversation I felt better. Better in terms of how important it is for Emily to have this surgery, and better about the decision to postpone it and possibly get a second opinion. He agreed to send an email to Dr. Zaidman questioning the timing of things and how soon she really needed to have this done. He also told me that he has done this surgery before and by all means it is NOT permanent. The stitches can be undone at anytime, for any reason. If we don't like the way she looks after her cornea has healed...we can have the stitches taken out. I joked around, half serious though....asking if he could do the surgery. No such luck...oh well.
After speaking to him and talking with Jason, we agreed that going to the extreme measures to get this done on Wednesday wasn't worth it. If it didn't feel right and there was any question about how safe it would be for us to travel in the snow, or costly to pay for a hotel...it just wasn't worth it.
After a very emotionally draining day, I felt better. I was going to be able to sleep tonight knowing that in the morning I was going to call and reschedule the surgery.
I was trusting my gut.
Tuesday, February 2, 2010
Appointment With Dr. Bortz
Tuesday 2/2/2010
Unfortunately I came down with the dreaded stomach flu and couldn't go to the appointment with Dr. Bortz. Today for the FIRST TIME EVER...Jason took Emily to the doctor by himself. We've either always gone together, or it was just me...never only him. I was just too sick to go, so what choice did he have? We could have cancelled the appointment, but decided not to. She needed to be seen and we needed answers. I just wish I had been there to ask the questions.
Not that I don't trust Jason, but I am always the one who deals with these things and know what kind of questions to ask, what kind of answers I need to hear. I didn't think to make a list for him, but even if I did he probably wouldn't have used it anyway.
When Jason called me after he left the office, surgery had already been scheduled for next Wednesday. Because I wasn't there I had to rely on him to relay the information from the appointment, which presents a problem. It was like playing fill in the blank because he doesn't retain information very well, so I'd ask a question and he'd have a hard time explaining or remembering what was said. Nothing personal against him, its just a guy thing I suppose, but frustrating none the less.
This is what I got out of it: At first Dr. Bortz really felt as though she might have some kind of muscular problem on that side of her face. He was watching her and didn't see her try to blink or close her eye at all. It was only after he put his hand in front of her face a few times (frightening her essentially) that she blinked and proved to him that she COULD blink on her own. Maybe it takes more effort for her to close that eye? I don't know, but after that he agreed that she needed the surgery, I found out later on that Dr. Zaidman was talking to him in the other room and Jason overheard him tell Dr. Bortz that this is what she needed. Was he pushing him to do this procedure????
He explained that her inner and outer eyelids will be separated and the top and bottom will be sewn together. A couple of stitches on the outer corner and possibly one or two on the inner corner. SHE WILL LOOK DRASTICALLY DIFFERENT. This is PERMANENT.
Wait...I thought this was supposed to be a temporary fix to help heal the scratch on her cornea! Not a permanent way to keep her eye halfway closed. If in the future (say 5 years from now) Dr. Kane or another doctor needs to go in and operate in that eye, the stitches can be undone at that time. But there could be some long term issues, such as eyelashes growing in the wrong direction. Well what about how she will LOOK? If her eyelid is sewn shut for 5 years I have to assume that it's not going to just spring back to normal without any difference in appearance! Yes, the point is to help her cornea heal so her vision can be maintained, but how she looks to the rest of the world will have a huge impact on her growing up. Right now she looks as normal as possible...after the surgery she will not.
I can feel the knot in my stomach forming already, it's like a dark cloud beginning to grow inside me. Everything about this surgery seems wrong.
Unfortunately I came down with the dreaded stomach flu and couldn't go to the appointment with Dr. Bortz. Today for the FIRST TIME EVER...Jason took Emily to the doctor by himself. We've either always gone together, or it was just me...never only him. I was just too sick to go, so what choice did he have? We could have cancelled the appointment, but decided not to. She needed to be seen and we needed answers. I just wish I had been there to ask the questions.
Not that I don't trust Jason, but I am always the one who deals with these things and know what kind of questions to ask, what kind of answers I need to hear. I didn't think to make a list for him, but even if I did he probably wouldn't have used it anyway.
When Jason called me after he left the office, surgery had already been scheduled for next Wednesday. Because I wasn't there I had to rely on him to relay the information from the appointment, which presents a problem. It was like playing fill in the blank because he doesn't retain information very well, so I'd ask a question and he'd have a hard time explaining or remembering what was said. Nothing personal against him, its just a guy thing I suppose, but frustrating none the less.
This is what I got out of it: At first Dr. Bortz really felt as though she might have some kind of muscular problem on that side of her face. He was watching her and didn't see her try to blink or close her eye at all. It was only after he put his hand in front of her face a few times (frightening her essentially) that she blinked and proved to him that she COULD blink on her own. Maybe it takes more effort for her to close that eye? I don't know, but after that he agreed that she needed the surgery, I found out later on that Dr. Zaidman was talking to him in the other room and Jason overheard him tell Dr. Bortz that this is what she needed. Was he pushing him to do this procedure????
He explained that her inner and outer eyelids will be separated and the top and bottom will be sewn together. A couple of stitches on the outer corner and possibly one or two on the inner corner. SHE WILL LOOK DRASTICALLY DIFFERENT. This is PERMANENT.
Wait...I thought this was supposed to be a temporary fix to help heal the scratch on her cornea! Not a permanent way to keep her eye halfway closed. If in the future (say 5 years from now) Dr. Kane or another doctor needs to go in and operate in that eye, the stitches can be undone at that time. But there could be some long term issues, such as eyelashes growing in the wrong direction. Well what about how she will LOOK? If her eyelid is sewn shut for 5 years I have to assume that it's not going to just spring back to normal without any difference in appearance! Yes, the point is to help her cornea heal so her vision can be maintained, but how she looks to the rest of the world will have a huge impact on her growing up. Right now she looks as normal as possible...after the surgery she will not.
I can feel the knot in my stomach forming already, it's like a dark cloud beginning to grow inside me. Everything about this surgery seems wrong.
Monday, February 1, 2010
Just As Expected
2/1/2010 - Appointment With Dr. Zaidman
No surprise here...Emily needs eyelid surgery. Dr. Zaidman had no hesitation about what our next step should be. After once again her left eye lit up bright green, indicating that the cornea was still scratched and not healing, he immediately told the Resident who was observing that the next step in treating this would be to do the eyelid surgery. My heart sank...I knew it was coming, but that didn't make it any easier to hear. He briefly explained about the procedure and told me that he wanted me to bring Emily back in the next day to see Dr. Bortz, another doctor who worked with him who would perform the surgery.
It wasn't a guarantee, just what he suggested she needed. He told me it was completely up to Dr. Bortz and how he felt we should proceed. He went as far as saying that the "scratch" wasn't really a scratch, but more like some form of a corneal ulcer (yet he said ulcer wasn't really the right word either). He thinks that the dryness in her eye that is caused by her (supposedly) not closing her eye all the way at night or blinking often enough, it what caused this scratch, ulcer or whatever it is to happen and not allow it to heal.
The theory is this: Because of the glaucoma, her left eye is larger than normal and doesn't allow her eyelid to close all the way or blink normally. If a few stitches are put into the corner of her eyelid, making the opening of her eye smaller and enabling her to close her eye more easily and more frequent, the dry eye will go away and allow the (whatever it is) to heal.
I'm really not liking the sound of this surgery, and who knows how long she will need to have the stitches in. Isn't this a little drastic?
I guess the appointment with Dr. Bortz tomorrow will give us some more answers.
For now, Dr. Zaidman told me to stop using the Tobrex ointment that we had been using to treat the scratches in both eyes. Maybe he felt it wasn't doing anything? I don't know...but instead of that, we will now be using the Systane Dry Eye ointment every 3-4 hours...until Dr. Bortz decides what to do.
No surprise here...Emily needs eyelid surgery. Dr. Zaidman had no hesitation about what our next step should be. After once again her left eye lit up bright green, indicating that the cornea was still scratched and not healing, he immediately told the Resident who was observing that the next step in treating this would be to do the eyelid surgery. My heart sank...I knew it was coming, but that didn't make it any easier to hear. He briefly explained about the procedure and told me that he wanted me to bring Emily back in the next day to see Dr. Bortz, another doctor who worked with him who would perform the surgery.
It wasn't a guarantee, just what he suggested she needed. He told me it was completely up to Dr. Bortz and how he felt we should proceed. He went as far as saying that the "scratch" wasn't really a scratch, but more like some form of a corneal ulcer (yet he said ulcer wasn't really the right word either). He thinks that the dryness in her eye that is caused by her (supposedly) not closing her eye all the way at night or blinking often enough, it what caused this scratch, ulcer or whatever it is to happen and not allow it to heal.
The theory is this: Because of the glaucoma, her left eye is larger than normal and doesn't allow her eyelid to close all the way or blink normally. If a few stitches are put into the corner of her eyelid, making the opening of her eye smaller and enabling her to close her eye more easily and more frequent, the dry eye will go away and allow the (whatever it is) to heal.
I'm really not liking the sound of this surgery, and who knows how long she will need to have the stitches in. Isn't this a little drastic?
I guess the appointment with Dr. Bortz tomorrow will give us some more answers.
For now, Dr. Zaidman told me to stop using the Tobrex ointment that we had been using to treat the scratches in both eyes. Maybe he felt it wasn't doing anything? I don't know...but instead of that, we will now be using the Systane Dry Eye ointment every 3-4 hours...until Dr. Bortz decides what to do.
Saturday, January 30, 2010
Left Eye Not Healing
We go to Dr. Zaidman on Monday and I already know what I am going to hear...
"Her left eye is not healing and she needs the eyelid surgery."
I have to prepare myself to hear that, but I'm hoping for a miracle between now and then.
"Her left eye is not healing and she needs the eyelid surgery."
I have to prepare myself to hear that, but I'm hoping for a miracle between now and then.
Friday, January 22, 2010
Pressure is good, for now...
Today we saw Dr. Kane and much to my relief her eye pressure is ok. It was 12 in the Right and 18 in the left. What we are doing now is working and hopefully it will continue to work. I hadn't seen Dr. Kane since the whole scratched cornea incident so he wasn't too thrilled to hear about it. Here we are once again, nothing can just be GOOD. With the good comes the bad....her pressure has been a thorn in our side since she was 6 months old...finally her pressure was under control after a dozen surgeries and countless medications. We can't just enjoy the success of that fact...now we turn our focus back onto the health of her corneas. Her left cornea had been doing fantastic and now this...its a disaster.
And I can guarantee that once her cornea is better, her pressure will be a problem again. It's just how it works.
And I can guarantee that once her cornea is better, her pressure will be a problem again. It's just how it works.
Wednesday, January 20, 2010
Trying to focus on the positive
Emily's visual therapist, Linda, has been coming to the house twice a month since Emily was only a few months old. She has watched her vision grow and improve month after month. Despite the medical roadblocks she has continuously had to navigate, her "usable" vision is fairly good. She walks and runs around like any normal 2 year old. We know she has vision in both eyes because her depth perception is dead on. When she reaches for something she grabs it on the first try, without mis-judging where it is or how far away it is. She plays with toys, looks at books, watches TV (albeit at close range) and goes up and down the stairs unassisted. Since she was about a year old, she has met just about every developmental milestone on target. She was a late walker, at 18 months, but I think that was more of a self confidence issue than physical ability. She cruised for months and would let go all the time, but taking those first few steps was a challenge for her. The day she turned 18 months old, she walked clear across our family room, which is pretty big. For a not quite 2 1/2 year old, her vocabulary is phenomenal. Her therapist, our friends, her doctors and even random strangers have commented on how well she talks. She is clearly advanced in that area, which is wonderful!
Her hearing is excellent, which is typical since if one of your senses is not on par, the other ones are heightened and pick up the slack. She can hear the word cookie or snack from across the house! She is amazingly sensitive to others feelings, often comforting someone she hears crying or knows is upset..."Tyler, don't cry" she said once, and it broke my heart. When we are in the grocery store and she sees or hears a baby..."say hi baby"...."why baby crying?". She is just so sweet.
She is definitely one tough little girl and has taught me so much about how to be strong and resilient. She's my shining star, her smile lights up my day no matter how dark it seems.
I love you punkin pie...
Her hearing is excellent, which is typical since if one of your senses is not on par, the other ones are heightened and pick up the slack. She can hear the word cookie or snack from across the house! She is amazingly sensitive to others feelings, often comforting someone she hears crying or knows is upset..."Tyler, don't cry" she said once, and it broke my heart. When we are in the grocery store and she sees or hears a baby..."say hi baby"...."why baby crying?". She is just so sweet.
She is definitely one tough little girl and has taught me so much about how to be strong and resilient. She's my shining star, her smile lights up my day no matter how dark it seems.
I love you punkin pie...
Friday, January 15, 2010
Right Eye Is Better, Left Eye Is Not
When I walked into the doctors office today, I could see that Emily's right eye looked a little better than it had a week ago. I also knew that her left eye wasn't really any better, which bothered me. I had been giving her the medicine and it was pretty clear that it wasn't working very well.
Dr. Zaidman looked at her and suggested that we add the Iquix back into the mix of eye drops to help aid in the healing. He said that he wanted to give her 2 weeks with this combination of meds and see how she does. If her left eye does not heal or look drastically better, he mentioned sending her to see another doctor for possible eyelid surgery. Ugh...the thought of another surgery just makes me sick. His hunch is that she is not closing her eyelid enough during the day or all the way while she is sleeping, and that is causing the dry eye...which in turn is not allowing the scratch to heal. If that's the case she will need surgery to put stitches in her eyelid to help it close better and maintain the moisture. He is also lowered the frequency of the Durezol, the steriod, in the left eye because that could be contributing to the dryness as it is a side effect. Going from 4 times a day to once a day is pretty drastic, especially since the steroid is what is helping to prevent the cornea from rejecting.
Obviously surgery is not an option that I want to consider. She has been through enough. I just hope and pray that the left eye heals within the next 2 weeks. Her appointment is Feb. 1st...
Dr. Zaidman looked at her and suggested that we add the Iquix back into the mix of eye drops to help aid in the healing. He said that he wanted to give her 2 weeks with this combination of meds and see how she does. If her left eye does not heal or look drastically better, he mentioned sending her to see another doctor for possible eyelid surgery. Ugh...the thought of another surgery just makes me sick. His hunch is that she is not closing her eyelid enough during the day or all the way while she is sleeping, and that is causing the dry eye...which in turn is not allowing the scratch to heal. If that's the case she will need surgery to put stitches in her eyelid to help it close better and maintain the moisture. He is also lowered the frequency of the Durezol, the steriod, in the left eye because that could be contributing to the dryness as it is a side effect. Going from 4 times a day to once a day is pretty drastic, especially since the steroid is what is helping to prevent the cornea from rejecting.
Obviously surgery is not an option that I want to consider. She has been through enough. I just hope and pray that the left eye heals within the next 2 weeks. Her appointment is Feb. 1st...
Thursday, January 14, 2010
Scratches on Both Corneas and Infection
Last Wednesday I noticed Emily's right eye seemed to be more bloodshot than it usually is. I mentioned it to Jason and he didn't really notice much of a difference...but I knew something was wrong. Two days later, on a day that Emily already had a scheduled appointment with Dr. Zaidman, she woke up and the second I tried to put drops in her eyes I immediately felt sick to my stomach. Flashback to Oct. 2008 when she had the corneal ulcer and infection in her right eye after she scratched it...It looked exactly the same. Are you kidding me???? What the hell happened????
I got the kids to school (late) and rushed off to Dr. Zaidman's office. I actually got there 45 minutes early because I didn't want to waste any time and thought if he wasn't too backed up he could take us in when he had an opening. WRONG....Do not show up early and expect to be seen even on time...I waited for over 2 hours. Emily ate every single snack I had with me and I was almost ready to go take a walk. It was about 95 degrees in there and I felt like between my nerves and the heat that I was going to pass out. I tried to keep my mind off of how bad her eye looked, but just trying to talk to Jason over the phone and explain what was going on, I started to get upset. How could this happen to her again?? And the worst part was that I saw something wrong with her left eye as well, it literally looks like someone peeled a layer of her cornea off. The right eye was much worse, looking like a crater in the center of her eye. I knew there was an infection...ugh. The part that irritates me the most is that Dr. Zaidman had kept her on the Iquix ever since her last infection like this, she was on it only once a day up until her surgery in November. But Dr. Kane took her off of it a few weeks ago. My gut told me not to stop it, but I was trusting the doctors. I keep thinking that had I not taken her off of that antibiotic, this wouldn't have happened. ALWAYS FOLLOW YOUR GUT! I try to as much as possible, but sometimes you second guess yourself.
I cannot put into words how twisted my insides felt when I looked at her eyes. I felt sick to my stomach with fear and was probably pretty close to having an anxiety attack. Finally when the one resident doctor called her in I was able to explain what I saw and he put drops in her eyes to test for a scratch. Her eyes lit up like a Christmas Tree. Both eyes, stained green in the center...that is not good. When you think of a scratch, most people visualize a thin straight line. When you are talking about a scratched cornea....its more like a scrape. It's not a line, its a large patch of the front of her eye that appears to be missing. It's not pretty to look at, in fact it really made me cringe when I saw it. Once again the stupid residents tried taking her pressure and because they use the stupid tonal pen it never works. Idiots...they have no idea how to work with a child.
Anyway, Dr. Z came in and did not like what he saw. She had been doing so well and now this! He couldn't say for sure that there was an infection, so he took a culture to make sure. But there was definitely scratches on both eyes. JUST GREAT! Hasn't this poor girl been through enough? Why did this happen? How did this happen? There is no answer. She could have rubbed her eyes too much, bumped her eye with a toy, scratched it with her fingernail...etc. We will never know.
So...we treat it as if there was an infection. Antibiotic ointment every 3 hours around the clock...yes we have to wake her up during the night to give it to her. She is no longer on the Durezol in the right eye, apparently he thinks there is no reason for it anymore and we are dropping the dosage in the left eye down to once a day. The weekend was exhausting. I had my cell phone alarm set for every 3 hours to remind us when she was due for it again. By Monday we were out of the ointment and tired as hell. She fared well though, only waking up enough to let us put it in and then going right back to sleep, not once has she given us a hard time. She is just amazing, taking this whole thing so well. But she doesn't know any better.
On Monday I took her back and the results were positive for infection in the right eye but not the left. Her eyes did look better, but Dr. Z wanted to add back in the Iquix so help speed the healing process. We are afraid that the scratch is going to cause damage to her beautifully clear cornea and that would be disastrous. He lowered the frequency of the ointment to every 4 hours, but still around the clock. It's been almost a week and her eyes look better, but not 100% yet. Hopefully I will get better news tomorrow at her next appointment.
As long as the infection stays away, this should not affect her transplant on Feb 25th. She can't afford to wait much longer, I can see she is losing some control over that eye. Which means she is losing vision too. I just hope and pray for everything to heal quickly without any additional complications.
And as for me...I'm handling this pretty well, with the exception of the day it happened. But by all means, pour me another glass of wine.
I will update again after tomorrow.
I got the kids to school (late) and rushed off to Dr. Zaidman's office. I actually got there 45 minutes early because I didn't want to waste any time and thought if he wasn't too backed up he could take us in when he had an opening. WRONG....Do not show up early and expect to be seen even on time...I waited for over 2 hours. Emily ate every single snack I had with me and I was almost ready to go take a walk. It was about 95 degrees in there and I felt like between my nerves and the heat that I was going to pass out. I tried to keep my mind off of how bad her eye looked, but just trying to talk to Jason over the phone and explain what was going on, I started to get upset. How could this happen to her again?? And the worst part was that I saw something wrong with her left eye as well, it literally looks like someone peeled a layer of her cornea off. The right eye was much worse, looking like a crater in the center of her eye. I knew there was an infection...ugh. The part that irritates me the most is that Dr. Zaidman had kept her on the Iquix ever since her last infection like this, she was on it only once a day up until her surgery in November. But Dr. Kane took her off of it a few weeks ago. My gut told me not to stop it, but I was trusting the doctors. I keep thinking that had I not taken her off of that antibiotic, this wouldn't have happened. ALWAYS FOLLOW YOUR GUT! I try to as much as possible, but sometimes you second guess yourself.
I cannot put into words how twisted my insides felt when I looked at her eyes. I felt sick to my stomach with fear and was probably pretty close to having an anxiety attack. Finally when the one resident doctor called her in I was able to explain what I saw and he put drops in her eyes to test for a scratch. Her eyes lit up like a Christmas Tree. Both eyes, stained green in the center...that is not good. When you think of a scratch, most people visualize a thin straight line. When you are talking about a scratched cornea....its more like a scrape. It's not a line, its a large patch of the front of her eye that appears to be missing. It's not pretty to look at, in fact it really made me cringe when I saw it. Once again the stupid residents tried taking her pressure and because they use the stupid tonal pen it never works. Idiots...they have no idea how to work with a child.
Anyway, Dr. Z came in and did not like what he saw. She had been doing so well and now this! He couldn't say for sure that there was an infection, so he took a culture to make sure. But there was definitely scratches on both eyes. JUST GREAT! Hasn't this poor girl been through enough? Why did this happen? How did this happen? There is no answer. She could have rubbed her eyes too much, bumped her eye with a toy, scratched it with her fingernail...etc. We will never know.
So...we treat it as if there was an infection. Antibiotic ointment every 3 hours around the clock...yes we have to wake her up during the night to give it to her. She is no longer on the Durezol in the right eye, apparently he thinks there is no reason for it anymore and we are dropping the dosage in the left eye down to once a day. The weekend was exhausting. I had my cell phone alarm set for every 3 hours to remind us when she was due for it again. By Monday we were out of the ointment and tired as hell. She fared well though, only waking up enough to let us put it in and then going right back to sleep, not once has she given us a hard time. She is just amazing, taking this whole thing so well. But she doesn't know any better.
On Monday I took her back and the results were positive for infection in the right eye but not the left. Her eyes did look better, but Dr. Z wanted to add back in the Iquix so help speed the healing process. We are afraid that the scratch is going to cause damage to her beautifully clear cornea and that would be disastrous. He lowered the frequency of the ointment to every 4 hours, but still around the clock. It's been almost a week and her eyes look better, but not 100% yet. Hopefully I will get better news tomorrow at her next appointment.
As long as the infection stays away, this should not affect her transplant on Feb 25th. She can't afford to wait much longer, I can see she is losing some control over that eye. Which means she is losing vision too. I just hope and pray for everything to heal quickly without any additional complications.
And as for me...I'm handling this pretty well, with the exception of the day it happened. But by all means, pour me another glass of wine.
I will update again after tomorrow.
Pressure Elevated in Left Eye
After a few weeks of no glaucoma meds, sadly Emily is back on the Timolol and Xalatan. Her pressure is up in the left eye. It went from about 18 to 26 in a weeks time. Dr. Kane said it might have something to do with the valve acclimating itself to her eye and that the pressure increase might be temporary. But for now, she's back on the meds.
It was a nice break...the only meds she was on was the antibiotic and steroid. It was the least amount of eye drops she had been on in the last 2 years. But I knew it wouldn't last for long. About 4 days after she started the drops again, her pressure was back down to 18, so at least we know the meds are working.
Her right eye hasn't been tested too much with the instrument, but Dr. Kane feels how hard or soft her eye is to judge the pressure and so far so good. Fingers are crossed that this will be a long term fix for her. I can take giving her the drops, I can't take more surgery. But we know she'll have at least one more...the cornea transplant again in her right eye at the end of February. As long as the pressure remains low...
It was a nice break...the only meds she was on was the antibiotic and steroid. It was the least amount of eye drops she had been on in the last 2 years. But I knew it wouldn't last for long. About 4 days after she started the drops again, her pressure was back down to 18, so at least we know the meds are working.
Her right eye hasn't been tested too much with the instrument, but Dr. Kane feels how hard or soft her eye is to judge the pressure and so far so good. Fingers are crossed that this will be a long term fix for her. I can take giving her the drops, I can't take more surgery. But we know she'll have at least one more...the cornea transplant again in her right eye at the end of February. As long as the pressure remains low...
Squishy Eye
Although Emily hasn't been on any medication for the pressure, Dr. Kane showed me how to press on her right eye and force the fluid to flow through the new channel he created. This will help maintain the lower pressure and possibly prevent scar tissue from forming in the channel. We've dubbed this maneuver "squishy eye" since that's basically what we are doing. I have to press on the lower portion of her right eye for 10 seconds. I am so afraid of pushing too hard, but at the same time I don't want to not push hard enough. When I asked Dr. Kane about it, he said I can press alot harder than I think. That doesn't really help me much!
Emily is ok with us doing it, but she is catching on. If we tell her we need to do "squishy eye" she knows what is happening beforehand. That helps to alleviate some of her crying. We try to make her laugh by counting out loud and being silly while we are doing it, otherwise she'd be freaking out. Sometimes she even tries to count with us, but she only says four and five over and over, its so cute.
It started out as once a day but now we are up to 4 times a day. I don't mind doing it, but it's the amount of force I am using that I am worried about. I don't want to hurt her.
Emily is ok with us doing it, but she is catching on. If we tell her we need to do "squishy eye" she knows what is happening beforehand. That helps to alleviate some of her crying. We try to make her laugh by counting out loud and being silly while we are doing it, otherwise she'd be freaking out. Sometimes she even tries to count with us, but she only says four and five over and over, its so cute.
It started out as once a day but now we are up to 4 times a day. I don't mind doing it, but it's the amount of force I am using that I am worried about. I don't want to hurt her.
Post Op Follow Ups
In the weeks following her surgery, Emily was seen by Dr. Kane at least twice a week. She was healing nicely and her pressures seemed to be remaining at a safe level. I was holding my breath each time I would take her into the city, just waiting to hear that all is well. Because of the danger of her right eye pressure being too low, she needed to be seen frequently. I have to say that I am thoroughly impressed with Dr. Kane's commitment to his patients. Emily needed to be seen, but he was not going to be in the office for the Thanksgiving weekend. So he invited me up to his house in upstate NY so he could examine her, he even offered to give us lunch! I felt honored and privileged to know that he cared that much about Emily to invite us into his home. The day after Thanksgiving, Emily and I took the 2 hour drive up into NY. His home was tucked away up in the mountains...a far cry from the busy streets of Manhattan. It was well worth the trip to know that her pressures were ok.
What an amazing doctor, I honestly feel like part of his family now. Thank you Dr. Kane for truly caring about Emily, we love you!
What an amazing doctor, I honestly feel like part of his family now. Thank you Dr. Kane for truly caring about Emily, we love you!
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