Sunday, August 23, 2015

Double Doctor Duty

November 24, 2014

Today we did double doctor duty, seeing both of Emily's NY eye doctors. First we went back to see Dr. Zaidman so he could check the scratch on Emily's cornea. Thankfully there was no infection, and the scratch has healed nicely on the surface, but will continue to heal for a few weeks.  Some scar tissue has formed, which was to be expected (been there done this too many times).  Her eye looks better than it did last week which is good news.  Her cornea transplant is scheduled for January 22nd and barring any further complications, we only need to come back on January 2nd to do one last measurement for the cornea.  We agreed that the cataract surgery will wait until after she has healed from the transplant, Dr. Z wants to get a better look at it while she is in surgery.

After we left Westchester we headed down into Manhattan to see Dr. Kane.  IOP was good at 12-14 and he seems to think she will do well with the transplant.  Fingers crossed for no complications with her eye pressure afterwards.

Again?!?! Another Scratched Cornea?!?!

November 17, 2014

On Saturday, Nov. 15, I took a short car ride to Toys R Us with the kids to spend their birthday money. Emily fell asleep in the car and was only asleep for about 20 minutes.  She was fine when we got in the car, but when she woke up her right eye was severely red and she was complaining of it hurting. Of course this happens on a Saturday and without going to the emergency room, we need to wait until Monday to have her seen.  I totally freaked out thinking that it was the first sign of the terrible infection that she had a couple months ago in her left eye.  I gave her extra antibiotic drops and hoped that by Sunday she would be ok.  But no such luck.

Monday morning I called and got her in to see Dr. Zaidman right away.  Of all things, she had a scratch on her cornea! Come on, can't this girl catch any breaks??? Dr. Z said it could have been from a bubble that we have seen come and go over the last few months that burst and caused a scratch. Or it could have been just a bad scratch. It was fairly large in size and had already caused her cornea to become cloudy...her vision was now less than it was 2 days ago. He took a culture to see if there was any infection and agreed to aggressively treat it with 2 different drops 8 times a day. It could take 3-4 weeks to heal and scar tissue may form where is heals, causing even further interference with her vision.

The saving grace to all of this?  The timing.  If this had happened 2 weeks later, it may not have healed in time for her transplant in January.  No surgery on an eye that is still healing from infection or injury.

I don't know who is in charge upstairs...but whoever you are, please just leave my little girl alone. She has been through enough.  Please stop putting her through so much pain!


Emily's "Frozen" Birthday!

October 25, 2014

With the news of another transplant on the horizon and all the fear and uncertainty of Emily's future looming over me, I really needed a positive outlet to help me shift my focus onto the brighter days ahead.  So I did what I do best...put together something extra special for her birthday.  I really should have gone into the party planning business, I love it so much.  All the small details really make such a big difference, even to an (almost) 7 year old.

Emily has been OBSESSED with the movie a Frozen birthday it would be!

First up was birthday pancakes and a special October "snowfall" in our dining room! Followed by a Frozen Ice Castle Cake and a Magical Transformation into Queen Elsa! Then a Frozen birthday party with friends at Westy's Gymnastics!

Today and everyday, we celebrate the pure joy and bright light that is our sweet Emily.  She brings life into every room she walks into!

 Happy Birthday sweet pea, I love you more than you know!

Cornea Graft Failure

October 10, 2014

I knew this day was coming, I felt it in the deepest part of my heart months ago, but that didn't soften the blow at all. Today was just verbal confirmation from the doctor.  Emily's cornea had failed...she would need another transplant, the third one in this eye.  Her doctor seemed hopeful, almost enthusiastic about her chances of better vision.  But the risks for both failure of the graft and complications with her eye pressure and cataract were higher than the previous surgeries she had been through.  Still, the risks did not outweigh the benefit.  With her cornea badly damaged, beginning to cloud up and scar tissue blocking a portion of her vision, the reality of NOT doing another transplant meant her vision would continue to deteriorate. Surgery was necessary.

Dr. Zaidman ultimately left the time frame of the transplant up to us, we could do it as soon as January, or wait for a better time over the next 6-8 months.  I hated the thought of putting her through this surgery again, but putting it off for a more convenient time in our lives seemed pointless.  So we scheduled the surgery for January 22, 2015.  It was after the holidays and would give her enough time to heal before spring and summer. She would need to be out of school for at least a week and no gym or sports for a month.

The other issue we needed to address was the cataract. Originally Dr. Zaidman wanted to remove it and replace it with a lens implant at the same time as the transplant surgery.  But for some reason now he felt that it would be better to do the transplant first, wait for her to heal and then go back in to the the cataract surgery.  I was concerned that this would possibly interfere with the health of the new cornea, but at the same time was leery about doing both surgeries at once.  The complications that could be triggered were serious...I hated that she had a cataract in the first place.

I believe that all the surgery that her left eye endured was the reason her retina detached...too much for her eye to handle:

  • 2 cornea transplants, 2 Ahmed Valve implants, multiple surgeries to remove scar tissue from the valves drainage tube, removal of the cataract, lens implant and Vitrecotomy (removal of the jelly-like substance within the eye) 
She has had slightly less complications with her right eye, but more surgery meant more chance of compromising the Trabecalectomy (new drainage path created for eye fluid to drain from), which meant we could be struggling to control her eye pressure again. And if cataract surgery was needed, disrupting the back of her eye could spell disaster and total blindness.  

I had to believe that this next transplant would be a new, fresh start for her. It would be the best donor tissue yet. There were no other outcomes I would even let my mind consider. This might be Emily's last chance...

Thursday, August 20, 2015

"Now my eyes look the same"

October 1, 2014

Today we went back to the occularist to get Emily's new prosthetic lens, one that would be painted to match her good eye.  I was nervous, mostly because I wanted her to simply allow me to put the lens in, and keep it in.  But matching it as closely as possible to her right eye was extremely important. This lens would be the first of many that would help her gain self confidence, determine how others would accept and embrace her disability and most importantly, impact how she viewed herself.  We all know she is beautiful, but children and adults alike often don't see their own beauty, they see their flaws instead.  I grew up with having a very low self esteem. I was made fun of for the way I looked, my haircut, the clothes I wore...and various parts of my body that were either "too big" or "too small".  I can pin point the exact moment in first grade when my nickname was given to me by some very mean girls on the playground. I know what I was wearing, where I was and who it was that said it. My life has not been the same ever since, and from that day forward I have had a body image problem.  I didn't have a physical disability, I was a normal 6 or 7 year old kid.  I'll admit, the name calling and teasing is what I fear most for Emily socially, so her new lens needs to look as natural as possible.  It needs to blend seamlessly with her other eye in order for it to not make her good eye, look like the bad one.

We arrived at the office and I thought I heard a familiar voice, but wasn't sure.  Then I saw through the open door to an exam room my friend Michelle and her son!  We met through both Dr. Zaidman and Dr. Kane when their second son was born. Both of their boys have pediatric glaucoma, and the older boy had recently lost his vision in one eye.  We have been talking on and off for years and although I knew they were going to bring their son to be fitted for a lens, I had no idea they would be there today!  It was a wonderful surprise, not just for us as parents, but for the kids as well.  Emily didn't remember him, but that didn't stop them from talking and playing like they had known each other for a long time.

While we waited for our appointment, and for the last minute details of Emily's lens to be finished, Michelle and I laughed and cried for at least an hour. We were there for support for each other, and for each others children, and it was nothing short of therapeutic for everyone.  Our kids and respective families have been through so much, and no one can understand exactly how you feel like someone else who has been in your shoes. It was wonderful to be there to talk her through some of her fears, and have her help settle some of mine.  They weren't supposed to be there, life through itself in the way of their original appointment, just like it had for us.  It was no coincidence that they were was the world working its magic for all of us who needed it.  Right place, right time, right people.

I was no longer nervous about how the lens would look, I knew it would be amazing.  But seeing it and helping to shape the outcome of either blurred lines around the iris, or a slightly bloodshot look to the whites of her eye, helped me realize it would be perfect.  When it came time to put it in, Emily was hesitant...but she let me do it.  She cried for a moment, and then opened her eyes and realized it was ok.  She was ok.  I cried...she was my Emily again...the most beautiful little girl in the world.  I hugged her probably for more of my own comfort than hers, and after wiping away some tears, I asked her if she wanted to look in the mirror and see how she looked.  And as she held the mirror up to her face she said "look mommy, now my eyes look the same again!"

In that bittersweet moment, there were no words to say other than, "yes Emily, they are!".