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....

Slow Healing

May 23, 2011

Its been two and a half months since Emily's surgery to remove the calcium buildup on her left eye and it is still not completely healed.  It took all of 3 days for the "bandaid" contact lens to pop out and that meant the risk of infection increased and new medicine needed to be used.  At first we tried Tobrex, an antibiotic ointment, but within a week it didn't appear to help heal her eye much and she started showing signs of dry eye again, which is what caused the scar in the first place (after she scratched her eye in January of 2010).  Here we are 16 months later and still dealing with the same scenario...frustrating does not even begin to explain it.

So Dr. Zaidman switched her off of the Tobrex and asked us to use an over the counter ointment called Lacri-Lube.  It's made by Refresh and contains 40% more mineral oil than other dry eye ointments.  Its the lubrication and moistness of her eye that allows it to heal so the additional mineral oil content makes all the difference.

Why can't this healing process just work faster for her???  It's breaking my heart.

Posting from the hospital...

I am attempting to write this post from the recovery room at the hospital. I think I have a WiFi connection.

Pillows of Hope has been a success!!! Today we brought 70 pillow pets to the Childrens hospital and the response was wonderful! 50 went upstairs to the kids who have been admitted and staying here while they fight their illnesses and recover from surgeries. The other 20 we brought with us into the surgical unit and passed a few of them out to kids who were having surgery today. Emily gave out the first one, a puppy, to a 4 week old little boy who was having hernia surgery. While he might not be old enough to fully appreciate what we were doing, his mom and dad were comforted buy our gift and our experience with Emily's previous surgeries. It was so nice to be able to help someone who had never experienced what we have come to feel is our normal...a day in the surgical wing with your child.

Emily went into surgery today at about 2:30, Jason went in with her to the OR. She is old enough now to understand what being here at the hospital means and when she was brought into the OR she covered her mouth...she knew the anesthesia mask was coming. "I don't want anything on my mouth" she said. I'm glad Jason was there, that would have broken my heart. This was Surgery #19 for our sweet little girl. She's a pro at this, but that doesn't mean its fun or not scary.

While she was in surgery we gave another pillow pet to a little boy and his face lit up like a christmas tree! His mom was in tears and I tried to comfort her telling her a little about Emily. This was her sons first surgery and she was scared. I'm not sure what he was here for, but I hope I was able to give him and his parents a little comfort and Hope that everything was going to be ok.

Emmy is now in recovery sleeping off the anesthesia, lying on daddy's lap. Dr. Zaidman said it was difficult but he was able to remove about 70% of the calcium scar. I haven't been able to see what her eye looks like yet,but she is wearing a "bandaid contact lens" while it heals. In other good news, her corneas look great and her eye pressure is normal! We are hoping for a complication free recovery which would mean the calcium doesn't come back and this procedure doesn't trigger any problems with her cornea.

Thank you to everyone who has kept Emily in their thoughts today and who have so generously helped us make Pillows of Hope a success!

More updates and pictures will be posted soon!

Update on Pillows of Hope

I am so overwhelmed by the response we've received about Pillows of Hope! I was brought to tears when I started receiving coupons, pillows and donations in the mail.  I never thought I'd have such a great response!  So far we have received more than 20 pillows (only 15 are in the picture below) and with the coupons I've gotten, we plan on buying a whole lot more! 

Thank you to everyone who has been so kind and generous! The kids at the hospital are going to LOVE these! We have 1 WEEK LEFT before Emily's surgery, so I will be using all those great coupons to purchase as many as we can very soon!  If you would like to donate a pillow, there is still time! And even if you can't get it to me before March 2nd, its ok.  Emily will be going back to the hospital often, so we can always bring your pillow at another time.  What's most important is that these adorable pillows bring a smile and hope to some very sick children.  Please continue to help us! 

Thank you again!

Renewed Inspiration - Pillows of Hope

Often we get so wrapped up in our daily lives that it takes something simple yet profound to remind us of things that really matter in life.  That is exactly what happened to me this morning. 

Just last week, we were blessed by the kindness and generosity of The Knights of Columbus in Kinnelon, the town Jason and I grew up in.  For the second time in a year they hosted a pancake breakfast fundraiser for Emily.  It took us by surprise because we had no idea they were planning it until a week before hand when a sign was posted in front of the town hall with the information.  The amount of love and support for Emily from friends, family and strangers alike has been extremely heartwarming and we are once again overwhelmed by it all.

For a very long time, I have been trying to find a way to "give back" and "pay it forward" but just haven't found something that would truly feel rewarding to us...until now.

While browsing through my facebook page this morning I stumbled upon a story that was posted by a friend in Indiana about a 7 year old boy with stage 4 Alveolar Rhabdomyosarcoma, a very aggressive cancer.  He was diagnosed on Oct. 13th 2010.  And at the beginning of his treatment, Jake faced 54 weeks of chemo, radiation and surgery.  His prognosis is not good but he is a very strong, brave and selfless little boy.  Inspired by the dinosaur pillow pet he was given as a gift, Jake is trying to collect 1,000 pillow pets for all of the sick children at his hospital.  Why pillow pets?  In the words of his mom "Because they don’t feel like playing games or doing the artwork all the time since the chemo makes them very sick. The doctors are telling the kids scary things every day, and there are lots of shots to endure.”  Jake knows what sick children really need...a soft friend to help comfort them when they are scared and not feeling well.

You can read about Jake's journey below:

http://thenorthviewblog.us/2011/02/05/jake-shows-compassion-through-pilllow-pets/

http://www.caringbridge.org/visit/jacobmcconahay.

I cried when I read about his story and immediately I knew what I needed to do. 

When Emily was just 5 weeks old, we brought her to the Maria Fareri Childrens Hospital for the first time.  The building looked so comforting and we had a sense of peace as we walked from the parking lot, hoping that our answers and a good prognosis for Emily's eyesight were waiting for us inside.  But as we approached the entrance, a young girl with a bandanna wrapped around her head was being wheeled out to her car in a wheelchair.  She was weak and we watched as her father picked her up and put her in the car.  She undoubtedly had cancer of some kind and at that moment my heart sank and tears welled up in my eyes. 

Inspired by Jake's story and that sweet little girl in the wheelchair, we have decided to also start a collection of pillow pets to donate to the sick children at the Maria Fareri Childrens Hospital. Emily has endured countless surgeries at this hospital and is scheduled for another one on March 2nd.  We are hoping that we can collect as many pillow pets as we can by then so that we can bring them with us that day. And she will be bringing along her own dolphin pillow pet she also received as a gift!

We know that Bed Bath and Beyond sell these adorable Pillow Pets and are hoping to collect as many of their 20% off coupons as we can from friends and family to use to purchase them with.  If you have any coupons you would like to pass on to us we would appreciate it so much!  Or if you would like to purchase a pillow pet to donate yourself that would be just as wonderful! 

Bed Bath and Beyond Coupons or Pillow Pet donations can be sent to us at the following address:

Pillows of Hope

c/o Emily Bott
13 Mott Drive
Vernon, NJ 07462

We are so excited about this and cannot wait to finally be able to pass on some of the kindness and happiness that has been given to us. Our goal is to make each child smile, give them some HOPE to hold on to and a little extra strength to fight against their illness. 

Please help us pay it forward!



Emily, you are our inspiration of HOPE!