Monday, January 23, 2012
Amazing Photo
Thursday, January 5, 2012
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.
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.
Monday, October 24, 2011
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.
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....
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....
Tuesday, May 24, 2011
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.
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.
Wednesday, March 2, 2011
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!
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!
Thursday, February 24, 2011
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!
Sunday, February 6, 2011
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:
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 Bott13 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! |
Wednesday, September 29, 2010
Invisible Confetti
I cannot express the relief I feel at this moment...
Each time I sit in the waiting room at a doctors office (for hours on end)...my anxiety level gets higher and higher. Its like waiting for a train that is perpetually delayed. You know you have somewhere to go, something important to do, but you can't get there if the train never comes. My destination is always the same and over the past (almost) 3 years, I have rarely seen it on the horizon. In fact its never guaranteed to even be a scheduled stop along the route.
Where am I always looking to go??? The answer is simple, the town of "Good News" in the state of New York. Its a nice town just on the outskirts of the city of Cornea and Glaucoma.
It has been 7 weeks since Emily was seen last by Dr. Kane and Dr. Zaidman, and I was growing increasingly more nervous about her eye pressure and overall health of her eyes. It had never been longer than 4 weeks in between visits and I began obsessing even more about what her eyes looked like. If something didn't quite seem right, I started to panic. There has been some strange redness under her left eye, which may have always been there but now I am looking more closely at it. I've noticed that eye drifting upwards a little when she is trying to focus on something and sometimes it seems like she isn't able to control it and has to close her eye to bring it back to center. We have been so diligent about the eye drops and ointments, and we're doing everything we are supposed to do. But I always second guess if its enough.
Last week I sat with bated breath as Dr. Kane studied her eyes over and over again. She was such a big girl this time, insisting that she sit in the chair all by herself. She squirmed and wiggled, but overall she did good. It was the first time I'd really been able to see her being examined that way since I'm usually holding her on my lap. It was kind of awe inspiring to see her sitting there, after everything she's been through, helping her doctor hold the button on the light he uses to see into her eyes. After a rather lengthy exam, he announced that she looks really good! Her pressures are 14 (right) and 18 (left), which is without the Xalatan (Glaucoma meds) for 2 days. This meant he was taking her off of it completely! ONE LESS drop each day!!! It might not seem like much, but when she has been on so many different drops and we are now removing one from the list instead of adding one, its a HUGE deal. And a sign that the valve implant was still doing its job, and well.
He once again checked her for glasses but couldn't pin point her exact prescription, so we wait. If he's not pushing for them, then I trust that he doesn't feel its crucial for her to have them right now. There are a variety of reasons why he is having difficulty, including the corneas themselves and the lens implant. She was doing good and we left there with one less medication on the list and an appointment in TWO months! I have arrived at "Good News"....finally.
But this was only one half of my round trip ticket. The next stop was Dr. Zaidman's office a few days later. Here we go again....
While waiting for my connecting train to arrive, I wasn't as anxious because I had already had some positive news under my belt. I went in there with just a hint of a smile on my face, and maybe a little less weight on my shoulders. I knew he would be pleased with the pressure, it was just the matter of the health and clarity of the corneas that were the remaining issues. Once again, little miss Emmy wanted to be a big girl so she sat in the chair all by herself and willingly put her head in the big machine that allows her doctor to more precisely see the cornea and inner workings of her eyes. I was so proud of her! "Everything looks perfect!"
BING! For the moment the nagging and annoying voice of doubt and worry is quiet. It's still there, just not saying much. The remaining weight has been lifted off my shoulders and I feel like I can breathe a little better now. Its amazing what our minds can do to our bodies. We physically feel the effects of our own thoughts and emotions.
Dr. Z also is decreasing the Durezol (steroid drop) from 3 times a day in the Right eye, to 2 times a day...which is a good sign. Now we are at a total of TWO LESS Drops per day! Again, on the outside looking in you might think "so what".....When at one point in time Emmy was getting over 60 eye drops a day...each time you lessen it, its like winning the Super Bowl...invisible confetti floats down around me in the doctors office and there is a ticker tape parade for her on our way down the hospital corridor and out to the parking lot!
I left there with a smile in my heart and again an appointment in TWO months! 6 months ago Emmy needed to be seen twice a week. "I'm gonna miss you guys" Dr. Z said as we headed out of the exam room.
Back on the train headed home...very happy to have been to "Good News" twice in one week. I hope to visit there again at the end of November.
In the meantime, I hope the hospital staff doesn't mind cleaning up all the confetti...
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...
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.
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