A Long, Hard Year

It feels like ages since I sat down and wrote about anything that has been happening with Emily.  My last post was in October when we first got her prosthetic shell...and I'm ashamed to admit that she still isn't wearing the shell.  I am terrified to put it in.  She is terrified to let me try.  Its something she needs, but forcing her will only hurt her, not help her.  I'm overwhelmed by the amount of emotional and physical stress involved in this process.  The Ocularist made it a point to say that I should not attempt putting her shell in by myself, so my husband and I need to do this together.  Its a process... Talking to her about it a lot should help, but getting her to actually allow us to do it is a completely different ball game.  While its not an imminent emergency that she be wearing it right now, she should have been wearing it months ago and TIME IS TICKING.  I need to refocus and regroup...but now we have a new issue thrown into the mix.  Cataract Surgery.

A month ago we saw Dr. Kane who alerted me to his suspicion that the cataract in her Right (only seeing) eye has grown and is not interfering with her vision.  Both doctors have been monitoring this for a while, but we had hoped it wouldn't progress.  Sadly it has.  Just a few days ago we saw Dr. Zaidman who also agreed that the cataract has gotten larger and more opaque, making it more difficult for her to see through it.  Her vision has gotten notably worse (in his opinion) since he saw her a few months ago.  Dr. Kane doesn't feel a lens implant would be beneficial at this time because the danger of a longer, more invasive surgery could lead to complications with not only her cornea graft, but also the area where he did the Glaucoma surgery a couple years ago.  After failed attempts at 2 Ahmed Valves and countless Glaucoma medications to regulate her eye pressure, he performed a Trabecalectomy, and created a new pathway for her eye fluid to drain from.  Her IOP has been stable ever since.  If an attempt is made to place a lens implant in her eye, the risk of damaging the pathway is too high.  If the pathway is compromised, trying to control her eye pressure again will be a major set back and possibly lead to further deterioration of what little vision she still has.  So...what does this mean???  It means that she will no longer be able to focus on anything without the aid of cataract glasses, which have very thick and strong corrective lenses.  She may not be able to see well enough without them to get around the house safely, so they need to be worn AT ALL TIMES. 

This will be a huge adjustment for her, and for us.  Right now she wears protective "cute" glasses with no corrective lenses.  But she doesn't like wearing them very often.  She takes them off before she even gets home from school and many times refuses to wear them at home.  The new glasses she will need all the time, so hopefully the necessity to see when wearing them will bring her to the realization that she can see with them and cant see without them. Remember...she's 5 1/2 - so rationalizing with her is not easy. 

Dr. Zaidman will be doing the surgery, but he doesn't feel its necessary to do it right away.  He has left it up to us to determine when the best time for us would be.  His OR schedule is booked solid through the end of May.  So he suggested either June or July, which isn't what I want.  I would rather her have the surgery now and get it over with.  It will give her time to heal and adjust to life with the new glasses before 1. school field day, 2. her dance recital at the very end of June, 3. Summer 4. Summer vacation at the shore towards the end of July.  As an adult we can rectify why our lives would need to be adjusted due to an unforeseen surgery/recovery and lifestyle change.  But for a 5 year old, all of those "normal" things are so important.  Missing out on something, or not being able to enjoy it the way you normally would, is devastating.  I don't know that with the glasses she will be able to dance the way she does now.  I don't know if she will be able to do gymnastics with the glasses on.  After the surgery she needs to heal AND adjust to a new way of seeing the world at the same time.  And to be completely honest...wanting my daughter to be happy, doing things she enjoys and being able to do them with the least amount of restriction is what matters to me the most.  The hell she has been through, and continues to go through, is not fair.  I don't want her to suffer or sacrifice anything more than she already has.  Why is God chipping away at her bright and colorful world????

I came across a photo of Emily this morning, taken ironically exactly 1 year ago to the day.  It was last Easter - April 15, 2012.  When I took that photo, I had no idea how powerful it would become.  It is one of the last photos taken of her before her world became darker.  That day could have been the very last day she could see with both eyes.  A week later we discovered that her retina had detached and she lost all vision in her left eye, for good.  I sat and stared at the photo earlier and cried, just as I am crying now...because she will never get back the innocence she has in that photo.  Her world will never be as bright, as carefree or as easy as it was that day.  But she is strong, stronger than I ever will be.  She is full of Hope and I pray that her Spirit is never broken.  Despite her disability, she is her own biggest cheerleader - showing us that she can do anything she puts her mind to and cheering us on to do it with her.  She will never know what our world looks like to us, but to her - its her normal and I have to learn to accept it just as she has...

 

April 15, 2012 

Prosthetic Shell...Day 1

Today Emily went to the Ocularist and was fitted with the first trial prosthetic shell. I have been dreading this day, knowing it wasnt going to be easy. Bribes of donuts for breakfast, lollipops and stickers if she was brave and let the doctor put the shell in, or as we are calling it a "lens". She wore the "lens" for about 5 minutes, crying the entire time, saying it hurt and she didnt want it in. It is going to take time and practice for her to get used to wearing it, so we will be working our way up to all day wear, 5 min at a time. If she becomes more comfortable wearing it, we will increase the time accordingly. But the end goal is for her to have it in all day, only taking it out at bedtime. We will be using some numbing drops just before we put in the shell to help ease the discomfort. This is the trial clear shell. The final shell will be hand painted to match her "good" eye once the correct size and shape has been determined. My heart was breaking today just watching her cry and refuse to open her eyes while it was in. So this is going to be a very difficult and emotional journey for all of us.

It looks like a contact lens, but larger and thicker. I wasn't sure what to expect, and until I have tried to put it in, am still uneasy about it. I know she needs this, it will be necessary for the rest of her life. It will be a learning process...many tears will be shed. Both by her and Me too.

I hate this...i really hate this. Most days recently i haven't paid too much attention to her lack of vision, just being as normal as possible. But from now on, her left eye will once again be a daily reminder of how much her life is NOT normal. This is not the life I wanted for her. She will never drive. She will most likely need special assistance in one way shape or form everyday for the rest of her life. Her life will not be easy. And that breaks my heart every second of every day. She will be fine, adapting to whatever obstacles are in her path. She is and stronger than I will ever hope to be.

But today, she was a scared little girl, and i cant help but feel like the innocence of her childhood has been stolen from her.

I love her so much it makes my heart hurt. And as i write this, tears of sadness are falling because she doesn't deserve the life she is being forced to live...

Angry Ramblings...

I've never understood why people who suffer, are forced to suffer over and over again.  While those who never see the dark side of life, continue to live in ignorant bliss of how the rest of us beg, borrow and steal just to make it through each day.  

To all of those who can relate...and when I say this you all will know exactly who you are..

While I may have once thought of visiting Holland ....I never asked to live there.  

Holland sucks. No offense to the actual country of Holland...I'm sure its very pretty and nice there.  But figuratively speaking, Holland can keep its tulips and windmills.

As I'm typing this it just occurred to me that it may not be a coincidence that in the springtime, hundreds of Tulips sprout up out of the concrete jungle, otherwise known as Manhattan, in front of the Morgan Stanley Children's Hospital.  Well played landscapers, well played.  Those of us in Holland get it. 

Tonight I am angry...

Emily's nightmare will never end...And as her mother, I live in her nightmare even when she is wide awake or peacefully dreaming of some far away place, like she is right now.

And anyone who thinks they can relate to how it feels to live in Holland...you can't.  You just can't.  Living in  Holland is a full time, 24 hour a day, 365 day a year, one way trip to hell.  You don't want to know how it feels...so go back to your blissfully ignorant life and be happy.  

                                 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Someone I was talking to today said in reference to Emily and myself... "You don't want to mess with Momma Bear, especially when her baby cubs are involved".  She could not have been more on point if she tried.  Not just in regards to Emily, but in general I am very protective over my children.  They are my love, my life and the center of my world.  If they hurt, I hurt. And as a good momma bear should, I will always have the source of that pain dead in my sights.  

That's why I have such a strong exterior, I need to be strong for them.  When life, and people in their life, continually disappoint my baby cubs, you better believe this Momma Bear is going to stand up on her hind legs and show her teeth.  My claws are sharp...if they weren't, what kind of mother would I be?

...Momma bear is watching and I never forget ANYTHING.  Especially not while I'm living in Holland.

The Sad And Hard Truth

After learning that her Retina had detached, I went into a dark place emotionally.  Its a familiar place that I recognized right away.  The sadness and desperation I felt the day we found out Emily was blind, had returned. I was scared for her, scared of the unknown.  


Her only hope was a surgical attempt at reattaching the retina, which carried only a 30% chance of success.  And if it could be reattached, there was no guarantee that any of her vision could be restored.  The sooner she had the surgery, the better. 


Why did this happen? 
When did the retina detach? 
Why haven't we noticed any change in her vision? 
How could we not know that something was drastically wrong???


As I walked out of Dr. Kane's office, I tried to hold myself together, waiting until I got to the parking garage to fall apart.  The irony is that 4 1/2 years ago I did the exact same thing, walking out of the exact same building, falling apart in the exact same parking garage.  Back then Emily was only a week old and her only hope of gaining any vision was to have a cornea transplant.  Different surgery, hoping for the same outcome.  I would take a cornea transplant over a detached retina anyday.  Sad, but true.  


Emily didn't understand what was happening, or why I was so upset.  I picked her up, hugged her and sobbed uncontrollably.  She was comforting me..."Mommy why are you crying, please don't cry, I love you."...as she pats my back as if to say its ok, everything will be alright.  And of course that only made me cry more.  Hasn't this child been through enough? WHY DOES SHE HAVE TO SUFFER MORE?!?!


When I was able to pull myself together, I got in the car and started heading home.  I had been texting my husband all afternoon so he knew what was going on, but I struggled to bring myself to tell him over the phone in more detail.  I honestly don't even remember most of the conversation because after I told him "only a 30% chance"...I think my brain blocked the rest out.


We were at a disadvantage.  The odds were stacked against us.  And thats not something we've ever had to contend with.  With all of her previous surgeries, odds for a successful outcome had always been in our favor.  I wasn't used to feeling apprehensive about whether or not things would work out.  I tried to remain positive, almost willing myself to believe that against all odds she would be ok.  But I had just had a line drive out of left field smack me straight in the heart...this was completely unexpected, and I had the wind (and hope) knocked right out of me.  Emily has been battling Peters Anomaly, pediatric glaucoma, cataracts, corneal ulcers, corneal scratches and bacterial infections for the last 4.5 years.  And for something completely unrelated to any of those issues to come out of nowhere and steal her eyesight forever, was probably the most difficult part to come to terms with.  Its like someone who has battled and beaten a life threatening disease, walks to their mailbox and gets hit by a bus.  It doesn't make any sense and it certainly doesn't seem fair.  Emily doesn't deserve this, plain and simple. Nothing about this is fair. 


Surgery was scheduled for May 1st, and with each passing day it became more obvious that she couldn't see out of that eye anymore.  I spoke with her teacher and therapist at school and the only thing out of the ordinary they can recall was her stepping off the balance beam more than usual during an OT session the week before.   When I covered her left eye and asked her if she could see anything out of her right she said yes.  But when I covered her right eye, I asked her what she could see and my heart fell to the floor when she said "nothing Mommy, its just black".  I didn't know how to process the amount of sadness those 5 words made me feel.  


May 1, 2012 - Surgery Day


This is surgery #20 
We were told the surgery would take 4 hours or more, so we prepared ourselves for a long wait.  She's older now and understands what being in the hospital means for her.  So even just the simple task of changing into the hospital pajamas is an issue.  We fought with her for a while and finally had to forcefully change her clothes, and then she cried "I don't want to wear the silly pajamas, I want to go home" for the next hour or more while we waited.  If I could impress upon any hospital that deals with children just ONE thing that would make a difference for the child and the parents it would be this...Wait until the last minute to make the poor kid change their damn clothes.  Is it really that big of a deal that you have to put her through more emotional torture than she already is dealing with? Or, here's a novel idea, give them a sedative FIRST.  


This photo of Emmy waiting to go back into the operating room says it all...fear, sadness, innocence...

We both took her back into the OR, and it never gets easier.  I fell apart in the same hallway where I've cried dozens of times before.  Only this time I knew there was something much greater at risk than ever before...there were no "next times" or "other options".  


Less than 2 hours had passed and we had made our way back up to the waiting room after getting something to eat downstairs. The nurse told us Dr. Lopez was looking for us...I knew that wasn't a good sign. 


We sat down with him in a small conference room and he laid it out on the line.  No sugar coating this one...He could not reattach her retina, it was torn and too far damaged to repair successfully.  She would never see out of that eye again.  


I was numb....it has been almost 2 months since that day and I am still numb.


I cried, Jason cried.  


A minute later a nurse came in to see if we needed anything but then had to politely kick us out because they needed the room for a meeting.  Gee thanks....you couldn't give us a few minutes to process the grief and sadness that just exploded in our hearts?  I hope their meeting was about changing the policy of when to put those stupid pajamas on the poor unsuspecting kids...


We went back into the waiting room and sat there in silence. My cell phone went off with a text from a friend asking how Em was doing.  I think it took me 5 minutes to type a complete sentence back to her. One letter, pause, next letter, pause...until the harsh truth was spelled out in front of me.  I couldn't bring myself to explain much to anyone else, so Jason texted a bunch of people and posted a small update on facebook.  I felt myself sink deeper into that black hole I had been in for a week.  


Dr. Kane came to talk to us after he finished up his part of the surgery.  He explained in more detail than Dr. Lopez did, but in the moment none of it really mattered.  They had to undo the stitches in the corner of her eye, and partially remove the cornea to allow for better access to the retina.  The stitches in the corner were not put back, there was no reason to. He removed the lens implant and the tube from the valve...no point in leaving those there either I suppose.  Everything felt so final, like after all this time we have no other option but to give up on the left eye.  And that was the reality of it...there was nothing left to try.  Like someone was calling time of death to that eye, while I am still yelling "clear" with the defib paddles in my hands.  I wasn't ready to give up. But everyone else was already walking away.  


Recovery was emotional torture. She came out of anesthesia begging and screaming for us to take the patch off her eye.  She just wanted to see with both her eyes. "I can't open my left eye"....her cries still haunt me.  The next day wasn't any better.  When we got to Dr. Kanes office and he allowed the patch to be taken off, she says "yay I can see with both my eyes again!"  Those words cut my heart into a million pieces.  


What happens now?
Her eye will deteriorate...the cornea will become cloudy and her eye will shrink in size.  It already had looked much smaller than the day before because all of the pressure was released during surgery.  Her eye had already stopped functioning, not just her vision, but the eye itself. 


At some point in the next 4-5 months we will need to take her to see an Ocularist, someone who will make a prosthetic shell to cover her eye.  They hand paint them to match the other eye so she will look more natural. But the function of the shell isn't just for aesthetic purposes, it will actually help to maintain the correct bone structure of her face as she grows.  Because her eye will no longer grow and support the space within the eye socket, the shell will provide that support, preventing any distortion of her bone growth and facial appearance.  THAT was a hard pill to swallow.  And once again its something we had never anticipated we would have to deal with.  


It has been almost 2 months since her surgery, and her eye has deteriorated quickly.  


This is our sad and hard truth...

I am still in the dark hole of sadness, I am still grieving for the loss of that eye.  The impacts it will have on her life are yet to be seen...and I am afraid for her.  Being legally blind in one eye, and visually impaired in the other is going to be a challenge for her...but she will overcome it and by all means never let it stand in the way of doing what she wants to do.  


My daughter has taught me so much about life, courage and strength.  She is one of the strongest people I have ever met, and she doesn't even know how strong she really is.  She's amazingly independent, always wanting to do things on her own, only asking for help when she really needs it.  She surprises me everyday with what she can see and do...and I have a feeling her entire life will be filled with much more success than failure.


She is Hope personified.

6 Months Of Heartache

It has been 6 months since I posted an update here on the blog.  So much has happened in that time.


January 6, 2012 - Left eye - another Corneal Ulcer and infection. We treated her with antibiotic ointment every 4 hours, drops every hour around the clock for a week. Then we dropped down to every 4 hours, but still had to give them to her throughout the night.  Medications continued for almost 2 months, finally only down to twice a day.  But as the ulcer healed (which was very slow), it made the scarring in her left eye bigger than it had been before. Dr. Zaidman believed she had learned how to see around the scarring, but began wondering how much she could really see.  

March 6, 2012 - After almost 2 months on the meds, it appeared she had gotten another infection in her left eye, so we began the whole hourly eye drops and ointment all over again.  I suspected she became Toxic from the Tobrex, which has a history of toxicity as a side effect from long term use.  No one would confirm that, but that was my gut feeling.  I backed off on the Tobrex and just gave her the other ointment and drops...

I started getting really depressed...My heart was hurting...I was struggling with why Emily has had to bear the burden of blindness and scared for what her future may be like. She will always be "different" to other kids. Right now she doesn't realize that physically her eyes are different than others, but someday she will. And her self esteem will inevitably suffer. I never want her to feel bad about herself, feel the pain of ridicule or failure. I can only protect her from the harsh reality of our world for so long...and it breaks my heart.

March 18, 2012

I noticed a red spot, like a blood blister, on the surface of her cornea on her right eye.  I knew it wasn't something that had been there earlier in the day and I began to panic thinking that it was a sign of a perforation in her cornea.  So at 8pm we drove out to Westchester to take her to the Emergency Room.  The ophthalmologist on call happened to be one of the residents that had seen Emily in the office and she was great with her.  She took a culture, used the slit lamp to examine her and determined that the red spot was a dilated blood vessel caused by a scratch on her cornea and/or the possible infection.  She called Dr. Zaidman and explained what she saw and then gave us some new drops.  The next day we saw Dr. Z and he was not concerned with the blood vessel at all. Since there was a scratch on the cornea we treated it with new meds that she would hopefully respond well to. It appeared as though she had built up a resistance to the one antibiotic drop she has been on which would explain why she keeps getting infections. He hoped the scratch would heal quickly without damaging the cornea or causing scarring.  Thankfully it wasn't as severe as we had thought the night before, but we were right to bring her to the ER. We also found out that the left eye was NOT infected 2 weeks ago, but it looks much much better than it did before. No infection, increase in meds didn't matter because she is resistant to it, it looks much Better and the only thing is she isn't on the Tobrex anymore? So...maybe I was right and it was toxicity from the Tobrex ointment. Of course he won't say that, but that's my take on it. 

The surprise of the day was when Dr. Z mentioned that the scarring on the left eye may need to be addressed, because as she gets older and begins to learn to read, it may impede her vision.  So...to my surprise he said a 3rd transplant may be necessary.  I had been under the assumption that a 3rd transplant wasn't something he would consider.  Maybe his opinion changed since then, but we know the success rate lessens with each one.  I was happy to hear he would consider it because I wanted her to have the best vision possible.

April 8, 2012 - Easter

Could she be any cuter or HAPPIER?!?!?!

These are two of the last pictures I have of her before devastation hit.  It's bittersweet because I don't know at what point things took a drastic turn for the worse.  She has never looked as beautiful, innocent and full of joy as she does in those photos.  My sweet Emily...My heart is overflowing with love for you.


16 days later...


April 24, 2012 - At a follow up with Dr. Zaidman, I mentioned that I thought the scarring in the left cornea looked a little bigger than before.  He began looking closer at it and suggested we do an ultrasound because he saw something he wasn't sure about.  After the ultrasound, he showed me an area on the screen behind her lens implant that he didn't understand.  There was something there, but he didn't know what it was.  It could have been a calcium buildup or scar tissue that formed around the tube from the Glaucoma valve, but he couldn't tell.  He wanted me to take her in to see Dr. Kane as soon as possible.  But it wasn't until he mentioned that he wanted a "Retina specialist" there as well, that I was really alarmed.  Immediately my heart sank and I knew that the "something" he saw could be her retina...he didn't say that, but in my heart I knew.


That night I went for a drive, I needed to get out of the house. My mind was racing a mile a minute and I ended up at a friends house...part of my heart is probably still lying on their floor because it poured out of my eyes like a river.  I wasn't giving up hope that the "something" was actually "nothing" or at least nothing "serious".  But I was scared to death that my intuition was right and that her retina had detached.  I felt better after talking it out with them, but the gaping abyss in my stomach was still there.  


April 25, 2012 - Dr. Kane examined her, but had no idea what he would see...


Dr Kane, Dr. Schubert and Dr. Lopez all did their own ultrasounds...all 3 doctors agreed...her retina had detached.  Sitting in Dr. Lopez's office trying to maintain my composure, but not doing a very good job at it, I asked the question that I already knew the answer to.  Through stifled tears I asked "So can she see anything right now"? ......


"No, she only sees darkness with that eye..."


...the sound of my shattering heart was probably heard clear across the city.

Ink is Forever

For a long, long time my husband has wanted to get a tattoo in honor of Emily and the struggles she faces everyday.  While a butterfly and the word Hope was an easy pick for me a couple years ago, he could never quite settle on something.  Until one day he was driving home from work and it hit him...

On June 2, 2012 - a friend of Jason's who does tattoo work made these words part of him forever...

Ink is Forever...Hope is Eternal

This tattoo means so much to him...its a reminder of her strength, her courage, her struggles, her determination, her journey...and the unyielding Hope that we have for not only her eyesight, but for the wonderful life we want her to have. A life that is full of love and laughter, goals and accomplishments, more successes than failures and more smiles than tears. 

Her eyes...is where OUR Hope for her lies.

Amazing Photo

I took this photo to try and get a better look at how the ulcer was healing and couldn't believe what I saw. Using the flash on my iPhone camera, you can see the beautiful red reflex...but look closely. You can also see not only the tube from the glaucoma valve, but the lens implant that replaced the cataract she had removed a couple years ago. The roughness of her cornea is harder to see but it shows the scarred area very well. I pray every day for healing, fading of the scar and continued clarity of her corneas.

It Was Only A Matter Of Time...

If there was one word to describe Peters Anomaly, it would be EVIL.  If there were two words to describe how I feel right now, it would be Helpless and Devastated.


If I had one question to ask God...it would be this:  With everything Emily has been through, WHY does she still need to suffer?


To be honest, God cannot give me a reason worthy enough of acceptance. 


The last few days Emily's left eye has not looked very good.  It has become bloodshot, swollen and her cornea looks as if it's "deteriorating" for lack of a better word.  I knew these signs, I knew in my gut what they meant.  And when I went back to a blog post I wrote back in January of 2010...

http://her-eyes-blueskys.blogspot.com/2010/01/scratches-on-both-corneas-and-infection.html

...it was confirmation to me that I was right.

Corneal Ulcer: an open sore, or erosion of the cornea, most likely caused by infection.

Last night I placed a call to Dr. Zaidman who was in surgery all day.  His secretary got a message through to him about Emily and she called me back to tell me I need to have her seen by our local Ophthalmologist today because he would be in surgery again all day. I called Dr. Morgan and left a message on his emergency line.  When he called me back he said he would call in a new antibiotic eye drop to use every hour while she was awake until he could see her.

It took me 2 hours and going to 2 different pharmacies to get her new drops and she was asleep by the time I got home.  I snuck in her room and gave her one drop.  I could not get in to see her doctor until 4pm the next day, so I made a judgement call to send her to school...only to get a call 20 minutes later from the school nurse who said she was in her office crying about her eye hurting.  I immediately picked her up and drove right over to the doctors office.  This could not wait until 4pm. 

When I got there I told the nurse not to even bother dilating her eye....she doesn't have a pupil in the left eye, so it would be pointless for her to do it and make us wait 20 extra minutes.  Why don't these people know she is not the average eye patient by now???  The other woman in the office was badgering me for the co-pay...well I was so distraught over the devastation this new eye problem could do to Emily's vision, that I left without my purse so I had no way to pay it.  She insisted I call my husband and get a credit card number because they needed the co-pay TODAY.  Ok lady whatever.  Your stupid $50 is not my top priority, sorry you can't see whats important right now.

When Dr. Morgan looked at her, his reaction said it all.  It was bad. Corneal Ulcers are never good, but
big ones are worse than small ones.  This one is big.  It encompasses most of the white scarred area on her left cornea, and in fact it may have enlarged that scarred area. 

He gave her some antibiotic drops and called Dr. Zaidman to consult with him about how to move forward with treatment.  While sitting out in the waiting room, Emily moaned in pain and clung to me while begging me to take her home.  We needed to wait to hear back from Dr. Z before we could leave and Dr. Morgan wanted to give her some more drops while we waited.  I hugged her tight...and not caring in the least about the other 5 people in the waiting room...I cried.  I've never been one to cry in public, or in front of Emily, feeling the need to be strong.  Show my daughter that although she may be feeling vulnerable, sad and in pain...I am her rock...I will be strong for her.  But in that moment I couldn't control my emotions.  My fear and sadness for her was too much to hold in.  Why does she have to endure such pain?  She has been doing so well, pressures have been good, corneas clear (except for the scarred area)...so WHY???

She. Does. NOT. Deserve. To. Go. Through. This.

Zaidman finally called back, with instructions to give eye drops every hour until he can see her tomorrow.  Dr. Morgan suggests to use all 3 antibiotics and just bombard her with meds since this needs to be treated "aggressively".  If that doesn't express the seriousness of this, nothing does.

I went to the front desk to see if there were tissues and the nurse felt terrible for us. Moments later, the secretary who was so hell bent on getting my co-pay from me, stood up and announced that I didn't need to worry about the co-pay...just wait for the bill to come in the mail and send in the payment when I got a chance.  Gee...NOW are you seeing that sometimes $$ isn't what makes the world go around?  My 4 year old daughter may lose her vision because of an infection that is ERODING her cornea, and all you care about is my freakin $50????  Thats right...you'll get my co-pay when I'm good and ready bitch. 

"Around the clock hourly antibiotic eye drops"...."need to treat this aggressively"..."Mommy my eye hurts, I just want to go home"...Those are the words written on the pieces of my broken heart today.
In the matter of days, my happy-go lucky, always smiling little girl who's outlook on life is that the world is full of rainbows and butterflies, was reduced to tears for the first time in her entire 4+ years because of her eye disease.  Not once during her 19 surgeries or countless complications that have developed from her condition, has she cried because her eyes hurt.   Maybe as a baby, she may have cried because she was uncomfortable, or because she was waking up from anesthesia and didn't understand what had just happened to her.  But she has never uttered the words "my eye hurts".  The sadness and pain in her voice today broke my heart, and once again I was helpless.  I can't fix her. I can't shield her from harm or hurt.  And as a mother, thats my job. 

When things are out of my control, they are in God's hands.  And while I will never lose Hope for her...I am starting to lose faith in myself and in God.  How can I/He allow her to continue to suffer?  Which one of us is dropping the ball?  Is He too busy answering prayers from those "praying" for things in life that don't really matter?  Like the Kim Kardashians of the world who probably pray for TMZ to see them living it up at the latest night club wearing designer jewelry, clothing, shoes and accessories so that they can pay for their $20 million wedding for a marriage that only lasted 72 days?  I heard somewhere that she had her "rear" insured because its part of her famous image.  Well I have a pretty plump ass too, where do sign up to cash in on my "assets" so I can ensure Emily has the best medical care money can buy?

....Emily has an appointment with Dr. Zaidman tomorrow morning at 10:30...only 16 more hourly eye drops to go...

The saving grace is that every time my hourly alarm goes off, I call Emily over to get drops and she comes running without hesitation.  You gotta love this girl's attitude.

Still on the Yellow Brick Road...

Tomorrow, October 25th 2011, at 10:13 am....My baby girl will be 4 years old.  While my heart is filled with an infanite amount of love and pride....I will forever be scarred from the pain I felt on that chilly October day in 2007, and it has nothing to do with childbirth.

Sara Evans, "I could not ask for more" was playing on the doctors OR playlist...I was numb from the waist down, all I could feel was tugging and alot of pressure as I gave birth via C-section to a beautiful baby girl, weighing in at 7 lbs 15 oz.  As I stared into the mirror above my head, my husband saying "We did it baby" rang in my ears but didn't register in my mind until someone said "its a girl!".  I couldn't believe it...I didn't know how much I wanted a little girl until those words were spoken.  And in that very instant my family was complete.  In that moment, I had found all I'd waited for...I didn't need to ask for more. 

But the irony in the song playing that day had not been realized yet...

"These are the moments
I know heaven must exist
These are the moments
I know all I need is this
I've found all I've waited for
And I could not ask for more"

Nothing would prepare me for what happened only seconds later...
My daughter, wrapped so snugly in a hospital blanket, was handed to my husband and brought over to me to meet for the first time.  I lay there, physically paralyzed in the delivery room...but my heart was beating out of my chest, I tried to cry but my lungs didn't feel like they were working, it was hard for me to breath deeply.  She was beautiful...and my heart was overflowing with love and joy, yet the moment she opened her eyes it shattered all over the operating room floor.  God had given us this amazing gift, our daughter...the baby we had dreamed about for 9 months.  That should have been the happy ending...but instead it was the beginning of a never ending nightmare.  Our precious baby girl, just seconds old, was already being challenged to a life of uncertainty and hardship....she was blind.

As the shards of my shattered heart were still settling on the floor, it was business as usual for the doctors and nurses.  They went to work putting the rest of my body back together, while they unknowingly had turned me into the Tin Man from the wizard of OZ...(there is irony in that statement as well).  I was about to become a poorly oiled machine, without a heart.  Or maybe I was the Lion....where my courage would be tested and the faith I had in myself would be questioned.  We were about to begin our journey down the yellow brick road to find the Wizard....the one and only person who could open the door for us and change my daughters world of black and white into a world of beautiful colors. (insert scene of Dorothy entering the land of Oz here).

Dr. Zaidman is our Wizard...he is the man behind the curtain. 

I DID need to ask for more...I needed to ask God to give us a miracle...Give Emily her ruby red slippers and allow her to see.  Forego giving the scarecrow his brain, and give Emily new eyes instead. 

4 years later, we found Oz and our wizard...but we still are and will always be on the Yellow Brick Road, waiting for the ugly flying monkeys (Cornea rejection and Glaucoma) to swoop down and take back what Emily has fought so hard for.

Holding My Breath

Its' been 7 months since I posted last, and I feel like I've been holding my breath for that long.  Emily's surgery to remove the scarring on her left eye was sucessful, but the healing process has not gone as expected.  Dr. Zaidman removed about 70% of the scar (calcium) and had to leave the remainder as to not do further damage to her cornea.  Her "band aid" contact fell out within 3 days of the surgery, and since then we've relied on Lacri-lube, a strong ointment commonly used for dry eye, as a protectant and to aid in the healing.  We still use the ointment at bedtime, and her eye still is not healed.  Our doctor was concerned up until about 2 months ago, but at that time said that the healing had been progressing because endothealials had begun being replaced.

When is this going to get better?

When am I going to be able to breathe easier?

I feel like I'm turning blue from lack of oxygen....