Sunday, January 25, 2015

An Unexpected Hospital Visit

Aug. 15, 2014

Today started out as a pretty normal day.  The kids and I took our new puppy Cassie to the vet for the first time and then hoped to spend the rest of the day doing some fun summer stuff.  But after we got home, Emily started complaining that her left eye hurt, specifically her lower eye lid.  I checked to see if maybe an eyelash or something else was in her eye and that's what was causing the irritation, but I didn't see anything.  I flushed out her eye well with some saline drops and she went back to playing.  A few minutes later she came back complaining of the same thing. I didn't see anything wrong but repeated the drops again.  By the third time she came back to me, now crying in pain, I knew something else was going on.  I gave her some antibiotic drops and Tylenol, and told her that it might help if she went to lie down in her bed and rest her eyes.  A little while later I heard her crying for me and running to the bathroom, to throw up.  Not a good sign.

My immediate thought was that she either had a stomach bug or strep throat.  Strangely enough Emily doesn't get a sore throat with strep, she throws up and gets a fever.  So if she developed a fever I knew we would be headed to the doctor.  She threw up one or two more times, and then eventually fell asleep in bed.  I kept checking her for a fever, but she never felt warmer than normal.  A part of me wondered if the upset stomach and eye pain were related, but it didn't make much sense at the time.  I thought about when we were at the Vet's office earlier, she was touching the exam table and had pet another dog that was in the waiting room.  Maybe she had touched something and then rubbed her eye, causing the irritation?  But how did the upset stomach come into play? Could it be a complete coincidence that these two things happened at the same time, but weren't caused by the same thing?  I wasn't convinced.  I kept checking Emily's eye throughout the night, it did begin to get irritated and bloodshot and she continued to say it hurt.  I had hoped that overnight it would resolve itself.  Although it was her left (bad) eye, I was still concerned about it being an infection that could spread to her right eye.

Ironically we were supposed to go to the Ocularist to get her painted prosthetic lens the next day...obviously we needed to cancel that appointment which was disappointing since we were making such good progress with the lens.

Aug. 16, 2014

I woke up before Emily and went in to check on her.  She didn't feel like she had a fever and hadn't thrown up all night.  I was really hoping she was better, sadly that wasn't the case.  When she woke up, her eye was even more red and swollen...and it was a lot more painful.  I gave her more eye drops, Tylenol and let her put a warm wet washcloth over it to see if that would help at all.  It didn't seem like pink eye, there was no discharge and it wasn't itchy.  Because it wasn't a cornea related issue, my first instinct was to call Dr. Kane...but it was Saturday. Why does it seem like all emergency issues happen on a weekend when you can't get in touch with your normal doctor?  Am I the only one this ever happens to?  Because it happens almost every. single. time.  Anyway, I had Dr. Kane's cell phone number, because in the past we've had to reach him for surgical follow up issues when his office was closed, but I didn't think that was his weekend emergency contact number.  I called his office line and got a message that said the office was closed for the next week...wait, what?! Ugh, frustration set in and my blood pressure began to rise.  The message said that he could be reached at his emergency number, which apparently is his cell.  But in my head, I knew if he was on "vacation" from his office, that he was at his upstate NY home, which was over 2 hours away.  I know this, because Emily and I were invited to visit there once after she had surgery just before Thanksgiving one year.  IF she needed to be seen...either he would suggest going to NY Presbyterian emergency room, or up to his NY home.  I didn't want to interrupt his vacation if I didn't have to, so I called Dr. Morgan, who is her more local Ophthalmologist.  If anything, he and the hospital he works out of were a lot closer than going to NY.

Around 9:30 am I called Dr. Morgan and of course got his emergency line.  I had his service page him.  Over an hour later he hadn't called back, so I had him paged again.  Another hour or two passed.  Within that time, Emily had thrown up again, which was strange since she was fine all night and had eaten something earlier.  I called a third time...this time I received a phone call within a few minutes.  He apologized for not returning my calls earlier, apparently he was at the gym and someone went into cardiac arrest and he had to do CPR to save the guys life.  OK, valid reason for not answering a page.  I explained what was going on with Emily and he suggested that he call in some oral antibiotics, Augmenten specifically, to try and get some more meds in her system since it seemed that there was some kind of infection going on.  When I mentioned that she had recently thrown up again, he said that if she can't keep the medicine down that we would have to bring her to Morristown Hospital where she would need to get IV medication.  Wonderful.  If she was able to keep it down, he would call us first thing the next morning (Sunday) to see how she was doing.

He called in the medicine to the pharmacy right away, except when I got there to pick it up, it was Amoxicillin instead of Augmenten.  I figured that maybe he changed his mind on what to give her and didn't really question it.  Thankfully she was able to keep the meds down and spent the rest of the day sleeping on and off.  She would wake up asking for another warm washcloth for her eye and then go back to sleep.  It was obvious that whatever was going on, really was taking a toll on her body and not just her eye.

Aug. 17, 2014

Dr. Morgan called just after 9:00am on Sunday morning.  Unfortunately the antibiotics had not helped because Emily's eye was much worse than it was the night before.  He suspected that it could be more than just an infection, that maybe it was a pressure related issue and he was going to contact a retina specialist to consult with him on it.  He would call us back in an hour and let us know what we should do, suggesting it might be necessary to bring her to the hospital.  After hearing that, I prepared for a hospital visit just in case and then waited...and waited...and waited.  I knew in my heart that this wasn't a pressure related issue.  Her eye wasn't functioning at all since she lost all vision a couple years ago, so there was no reason for a build up of pressure.  It made no sense to me.  I tried calling him back on his cell phone a couple of times and left multiple messages.  It had been over 3 hours since we had spoke and with the amount of pain Emily was in at this point, I made the decision to just bring her to the Emergency Room.  Her eye was getting worse and I couldn't wait any longer to get her help.

On our way to the hospital, I called and left another message telling Dr. Morgan that we were on our way down.  We stopped and dropped off the boys at my parents house and then made our way to the ER.  When we got there I told the nurse that I had been talking to Dr. Morgan and explained the whole ordeal over the last 2 days.  I also called again and left him another message letting him know we were now AT the hospital.  When we were finally seen by the ER doctor, I was told Dr. Morgan had called and spoken to them and told them he felt it could be an issue of high eye pressure. They insisted they try to take her pressure, give her 3 different glaucoma drops and start an IV for fluids and antibiotics.  If it helped to reduce the eye pressure, redness and swelling then they would have some explanation as to what was going on.  But I knew the eye pressure concern was a waste of time.  Dr. Morgan did call me and tell me that he spoke to Dr. Lalin, a retina specialist, and this is what they felt would be the best course of action to start with.  I told the nurse and the ER doctor that she had dealt with high eye pressure in the past, we know exactly what it looks like when the eye is bulging or a bubble forms in a weak spot of the cornea graft.  This was not that AT ALL.  At that point I bit the bullet and called Dr. Kane.  I hated to do it, but I knew the doctors were going in the wrong direction with this.

Dr. Kane immediately agreed with me that this was not a pressure issue, but by that point they had already given her the glaucoma drops and were waiting to take her pressure again.  He felt very strongly that there was an infection of some kind going on and that either an ultrasound or a CT of her eye was needed to make sure the infection wasn't inside or behind her eye.  What he said next made me feel like I got punched in the stomach and stabbed in the heart at the same time.  If the infection was either inside or behind the eye, it would be necessary for them to do one of two things; either do surgery to go in and clear out the infection, or remove her eye completely.  I felt sick.  I wanted to throw up.  I wanted to scream at the top of my lungs that this wasn't fair.  I was not mentally prepared for that at all and emotionally it would wreck me.  It would damage Emily's spirit and I couldn't imagine how she would handle losing her eye completely.  This just couldn't be happening, not now, not to her.

When I got off the phone with Dr. Kane, I explained everything to Jason and inadvertently Emily overheard the part about removing her eye.  She started to get upset and crying about not wanting them to take her eye out.  I tried to reassure her that I would do my best to make sure that didn't need to happen.  I quickly found the ER doctor and explained that Dr. Kane insisted they do an ultrasound or CT.  There wasn't an ultrasound technician on duty that would be qualified to do it on her eye, so we were forced to do the CT, which was fine because it would show in more detail what was going on.  Within 10 minutes she was brought to radiology.  They ordered the CT with contrast and I waited outside in the hallway.  I remember standing there saying a prayer quietly, but out loud. "Please let her be ok, please let her be ok, please let her be ok..." I probably said it 50 times or more before she came out of the CT room. Images of her with no eye kept flashing through my mind, I had to force myself to push the thoughts of  her wearing a full prosthetic eye for the rest of her life out of my mind.  I just couldn't go there. Now, we had to wait for the results.

Back in the ER room, we sat...and waited, and waited, and waited.  Emily's eye was getting more swollen and her pain level was increasing.  While we were waiting for the CT results, they gave her a dose of morphine to try and help alleviate the pain she was in.  A short while later the doctor came in and said that the CT showed a fluid pocket inside her eye which could be a sign of infection, but nothing was seen behind the eye, which was at least some good news. I couldn't help thinking that since her retina had detached a couple years ago, is it possible that the retina was what the radiologist was seeing as a "pocket of fluid"?  Maybe, just maybe, it wasn't what they thought it was.  Because of the location of the "fluid", a retina specialist would need to determine the next course of action.  They decided to admit her overnight in hopes the IV fluids and antibiotics would help and that by morning the swelling would be less.  Ironically they never bothered to re-check her eye pressure so I guess Mom's do know what they are talking about sometimes. I just wish they would have listened to me from the beginning, it would have saved some time and aggravation.

The silver lining of todays ordeal...A good friend of mine is a pediatric nurse at Goryeb Children's Hospital in Morristown, where we were, and I had texted her earlier to let her know Emily would probably be admitted overnight. She just happened to be on duty that night and we were lucky enough to have her as Emily's nurse!  What a blessing because it put me at ease knowing that Emily would be in excellent hands! We were able to get situated in a room and chat for a little bit about what was going on.  It was nice to see a familiar face, one who already knows so much of Emily's medical history.  Jason's brother and his family happened to be passing by the area and decided to stop by to see Emily and say hello.  At first when they arrived, Emily seemed to be awake enough to know they were there, but she sat up in bed and the morphine must have kicked was she loopy!  I haven't ever seen her like that before, it was kind of scary, but we knew it was the meds and that it would wear off as she slept.  Then I noticed something really weird. As Emily was taking a sip of juice, her face started to get all blotchy, not all in one place, but in random spots. Christine, our nurse, also noticed it, but then it was gone!  Weird.  She at first thought it could be a reaction to the morphine, so that's what we were attributing it to.  But as it kept happening over and over again, we got to thinking...what else could it be from? There was no rhyme or reason to it, it showed up in different places each time and was gone as quickly as it showed up.  Then I remembered that she had the CT with contrast...could it have been a reaction to the dye? We might never know, but within a few hours it stopped happening.  We settled in for a long night, and tried to get some sleep, we knew the next day would be a difficult one.

Thursday, January 22, 2015

Chronic Deterioration Of The Cornea

Aug. 1, 2014

After 3-4 days of not seeing the bubble on Emily's cornea, we thought it might have been a fluke thing.  But it finally came back...and only for a brief moment or two.  Jason's parents were watching the kids while I worked a couple of days during this week, and of course the bubble has to resurface when I'm not around right?

It went away as quickly as it showed up.  In fact, my mother in law wasn't sure she even saw it.  But I'm sure it was there.  So I called and made an appointment for Dr. Zaidman to see her.

I hadn't seen the bubble personally in a while, and it wasn't there the day we went to Zaidman's office.  But based on what I described and the current condition of the cornea, Dr. Zaidman said that what we saw was ultimately a corneal blister.  Its a fluid fillled bubble that may come and go, which was the case for Emily.  He went on to describe everything that we had seen and experienced thus far. 

The reason for the appearance of the bubble is fairly simple, it's a sign of chronic deterioration of the cornea.  As the cornea starts to fail, the 5 layers stop absorbing fluid or letting fluid pass thru them properly. The bubble is essentially an indication that at least one or more layers are no longer working as they should. When the bubble appears, it's filled with fluid. If it disappears the fluid has eventually been reabsorbed. The danger is when the bubble appears but doesn't not go away. If that were to happen, it means the cornea has stopped functioning and Emily would need another cornea transplant as soon as possible. 

So as long as the bubble continued to come and go, we could hold off on the transplant and hope that things would improve. 

For the moment, we were cautiously optimistic since the bubble hadn't been showing up very often. I tried to not constantly look for it, because up until this point I was obsessing, looking at her eye every 5 min. 

My heart was breaking because I knew her eye was failing. But at the same time I felt somewhat relieved that whatever was happening wasn't of an immediate concern. The panic I felt that day at the shore when I first saw it had subsided, but honestly it was always just under the surface anyway. Each time something doesn't look quite right with her eye, my heart jumps out of my chest and runs around bleeding all over the place...It's a vicious cycle I can't seem to escape from. 

Saturday, January 17, 2015

A Bubble...

July 24, 2014

In a previous post, I referenced the fact that we never seem to be able to go on summer vacation without there being some kind of crisis with Emily.  Why can't this poor girl just enjoy summer without having some major problem ruin it?  Maybe its a coincidence, but I honestly doubt it.  Last year it was a trip to the local ER for a virus that manifested itself  in the form of a fever and rash. This year, our vacation was turned upside down by a bubble.

On the first day of the year, we sat down as a family and wrote a list of things we wanted to do during 2014...a bucket list of sorts.  Our goal was to cross off as many of those things as we could, realistically speaking of course.  One my contributions to the list was to go crabbing while we were down in Ocean City.  I used to do it all the time with my dad as a kid, and we hadn't really done that yet.  The kids like to go surf fishing with my dad while we spend the day on the beach, so crabbing on a chillier, overcast day seemed to make sense.  Why waste a good beach day right?  On this particular Thursday, only having 2 full days of vacation left, we decided to try a few different crabbing spots.  Jason took the kids for a bike ride on the boardwalk in the morning.  I didn't go on the bike ride because I wasn't feeling very well that day, so I went with my parents, sister and sister in law and found a small dock near the marina to set the crab traps.

Jason and the kids took a while to get there, and by that time we had already caught a few crabs.  The kids were so excited to see what we caught, but Emily was afraid to look at them too close.  She was standing next to me while I was sitting down on the dock, and as I looked up at her face, I saw something that immediately stopped me in my tracks and made my stomach turn.  A bubble...on the center of Emily's right cornea.  I wanted to include a photo of the bubble so everyone could understand what we saw, but I lost all the photos from my phone.

It was like someone punched me in the stomach and stabbed me in the heart at the same time.  Its that feeling you get when you know something really bad just happened and you have absolutely no control over it.  You have no way of changing it or making it go away.  You can't fix it, un-do it, go back and time and prevent it or go into the future to see if everything will be ok.  It's the kind of moment I have had over and over and over again since Emily was born.  I felt my stomach turn, my heart begin to bleed internally and tears prick the corners of my eyes.  But I had to hold it together.  I didn't want to alarm Emily, and scare her. I also didn't want to draw attention to the problem before I could process this in my own mind.  I asked Emily if she could see ok, if her eye hurt, or if anything felt wrong to her.  She said no, it didn't hurt and yes she could still see fine.  I took a few pictures of what I saw, and my sister saw me wiping away my silent tears. She asked me if I was ok so I quietly told her and Jason what I saw and we all knew it was bad. We finished crabbing and headed back to the house.

When we got back to the house, I gave Emily extra antibiotic eye drops just in case there was some kind of bacterial infection going on.  Speculation began to grow about how and why this was happening.  Did a piece of sand get in her eye?  Was it the salt water?  Did she get poked by a beach toy or sea shell? Was it caused by severe dry eye from the wind?  Was her eye pressure elevated?  All kinds of theories were being considered.  I put a call into Dr. Zaidman, her cornea doctor, and of COURSE its after hours and no one is in the office.  I called the emergency number and had them page the Ophthalmologist on call. Because I was trying to keep the problem from becoming an all out vacation ruining crisis, I didn't alert my mother to what was going on.  I needed to take care of this without the added anxiety and second guessing.  I was doing what I needed to do, call and talk to her doctors.  Now I just needed to wait to hear back from them.

We all went about the task of preparing dinner; the crab we caught, a nice steak and other seafood we bought at the market.  Our traditional seafood dinner while at the shore was something we always looked forward, I didn't want to ruin it for anyone.  So I put a smile on my face, poured a glass of summer wine and tried to hold it together.  When the phone rang with a NY area code, I went out to my car and took the call.  I didn't want anyone hearing this conversation.

I gave the resident ophthalmologist a brief run down of Emily's history and then explained the bubble that I saw.  He gave me his cell phone number to text him the picture I had taken, so he had a better idea of what I was talking about.  We hung up so I could send the photo and he said he would call me back.  Later on, he called again and explained that it was hard to determine what was going on without actually seeing her...(no shit, I hate this answer...for gods sake just tell me what you think it could be and if its an emergency situation or not).  He went on to say that there could be a number of reasons that this occurred, and that the best way to help her was to take her somewhere to be seen. Because we are 3 1/2 to 4 hours away from the doctors and hospital I trust, we had a decision to make.  Either we could take her the CHOP (Children's Hospital Of Philadelphia) which was about an hour and a half away, or wait until the next day and Dr. Zaidman's office would call me with the names of doctors in the area that he would recommend going to.  Dr. Z would call and speak to whoever we decided to see.  The resident left the decision up to us and told us to call him back if we decided to go to CHOP so he could get in touch with someone there.  Otherwise, we would hear from the office in the morning.  Obviously he didn't seem to think it was a true emergency situation, or he wouldn't have given us a choice.  

I hung up and immediately fell apart.  A wave of various emotions washed over me in a matter of seconds.  I was scared for Emily and what this could mean for her vision.  But there was a part of me that felt defeated, disgusted and surprisingly angry.  Our family vacation was over. Once again, we couldn't just enjoy our trip.  We couldn't escape the reality of Emily's medical problems. There was no escape, there was no vacation from her eye disease, we would never be free from it.  It consumed our lives and that made me more angry than words can express.  It made the decision I had to make, both for Emily and our family, even more difficult.  Was it selfish of me to just want to finish our vacation and deal with this when we got home?  It made me sick to think we would be spending the last full day of our trip in a hospital or doctors office instead of on the beach.  I mean physically sick.  I wanted to throw up, and I almost did right there in my car.  I was sobbing uncontrollably, banging my hands on the dashboard out of anger and frustration, desperate to wake up from this nightmare.  A large part of me was sad that either I would have to take Emily by myself and leave Jason to spend the day with the boys, or that Jason and I would both go, therefore depriving them of spending the last day on the beach having fun as a family.  Or, a third option was to just pack up, leave a day early and drive Emily straight to Dr. Zaidman's office the next day.  Why would I waste time and money to go see doctors who don't know her, needing to explain her entire medical history to someone
WE don't know...someone we don't trust.  Ending our vacation early was a real option for me, I didn't want to do it, but I would if it meant doing what was best for Emily.  I must have been crying so loudly that someone, I honestly don't even remember who, came out to the car and opened the door to see if I was ok.  It might have been my sister or sister in law, it could have even been Jason. I really don't remember.  All I remember is how I felt...helpless.

I eventually calmed myself down enough to be able to walk back inside.  I found Jason and we discussed what our options were.  We were leaning towards waiting until the morning to either find a doctor or just go home early, going to Philadelphia seemed like the last thing we wanted to do. But then...I looked at Emily's eye again, and the bubble was gone.  Just Gone.  She wasn't in any pain or discomfort and she was acting fine.  WHAT JUST HAPPENED??????  Did the extra eye drops help to alleviate the problem?  That's the only thing we did differently, its the only thing that made sense.  My heart suddenly didn't feel so heavy...and maybe...just maybe,,.it meant that we didn't have to end our vacation early.

We had a very nice dinner...and I tried to enjoy the rest of the night to the best of my ability.  A bottle of wine helped.  A lot.  None of us (who were aware) could believe that the bubble we all saw, was no longer there.  We all assumed that if it had popped, that she would have been in pain, or we would have noticed real damage on her eye.  But it looked fine, or at least as good as it did prior to the bubble appearing and she never complained about it hurting.  It was one of the most bizarre things any of us had witnessed.  I just prayed it wouldn't come back again...

The next morning, her eye looked ok, no bubble.  Dr. Zaidman's office called me with the names of somewhat local doctors that we could go see.  But when I told Daria that the bubble disappeared within an hour of giving her the extra eye drops, she was shocked.  She relayed the information to Dr. Zaidman who agreed that if the bubble didn't come back that it would be ok to just wait until we came home to have him examine her. If he felt she still needed to be seen, we would have just come home instead of involving another doctor.  But he was ok with waiting until the following week as long as the bubble didnt come back.  While I was relieved to think we could try and have a nice end to our trip, I knew it would be jaded by the prior nights events.  I insisted she wear sunglasses at all times while she was outside, and if we went to the beach, she would wear goggles in the water.  We tried, and I use the word loosely, to have a normal day.  I fought off tears most of the day and was checking her eye constantly.  I struggled with just "letting her be a kid" playing on the beach.  She wasn't a normal kid, she doesn't have the luxury of throwing caution to the wind.  At any given moment her life can be turned upside down.  Its a difficult balance between the need to shield and protect her from the dangers that could jeopardize her vision and the thought of if she loses her vision tomorrow, she will never be able to experience life the same way again...

The bubble didn't return before we left to come home, so I had hopes that everything would be ok and that it was a one time freak thing.  Little did I know that as we were trying to enjoy the last day of bright sunshine on the warm sandy beach, the black cloud of 2014 was just beginning to form over our heads.

Monday, January 12, 2015

Back To The Ocularist

June 21, 2014

After about 6 months of getting more used to wearing her prosthetic shell (we call it a lens) we went back to the Occularist to check if everything was ok.  I had noticed that Emily's eye was getting red more often when she had it in for a whole day and she had been starting to complain that it was bothering her.  We hadn't been back to the office in (don't judge) a year and a half.  I of the year for sure right?  Before having Dr. Kane's help in getting Emily to finally wear the lens back in January, she had been scared to wear it, and I had been terrified to even attempt to put it in.  But...we've had a lot of success in her wearing it more consistently over the last 6 months.  She has gotten more used to it, and I've become more comfortable with putting it in and taking it out.

While at the office, Christina, the occularist, felt that the lens was touching the center of her eye too much, so she decided to make a new lens and create a deeper interior to allow for more space between the lens and the front of her eye.  She hoped it would help to alleviate the irritation and redness that she had been experiencing.  We left without trying it give her eye a rest. I would put it in the next day and see how things went.  If the size and shape was ok we would come back in a few weeks for a final adjustment.

July 9, 2014

The deeper sized lens seemed to fit better and caused less irritation.  Emily would wear this lens for about a month or so.  We hoped this size would be good, and if there were no issues, at the next appointment she would create the painted lens based on this size and shape.  We agreed that we wanted her to have the painted lens before school started, it would be really good for her.  Our next appointment would be August 16th.

Over the next few weeks we would be spending a lot of time in the lake, at the shore, and in the pool. So the lens was going to be out more than it was in because she can't wear it while swimming.  We were making progress, a little at a time, and I guess that's all that mattered.  Her eye was shrinking more, and without the lens in it was very much affecting the way she looked.  The lens really did change the way her face looked, I hadn't noticed it too much prior to now, but when she has the lens out, its very obvious. Its one more heartbreaking realization that her blindness doesn't just affect her ability to see, but so many aspects of her life.

But this appointment was very emotionally taxing for me.  In order to prepare for the next step, we discussed what we wanted her prosthetic lens to look like.  Did I want to have it look "normal", match her other eye as closely as possible, or something in between?  I hadn't put much thought into it before, mainly because it was something we really didn't know much about.  The few prosthesis I've seen in the past have always looked normal to me, I never realized that we could customize it to look exactly the way we wanted it to.  We talked for a while about color, the size and shape of the pupil and even the defined lines around the center and outer edges.  I decided that I wanted to start with something in between normal and what  her other eye looked like.  I didn't want it to look perfect and then draw attention to how different her good eye looked. I also didn't want it to completely match either because I knew at some point she may need another transplant and then it wouldn't match anyway.  Deciding how your child will look is surprisingly stressful and emotional.  Its not as easy as you would think.  A lot of details go into making it look just right...the shade of blue, the blurred edges of her cornea, even the not quite white part of her eye with just the right amount of blood vessels. It's hard to think that if I make the wrong decision, she won't look right. What if it looks TOO fake?  Will people make fun of her? Or will she look more beautiful than ever?  Parents normally don't get to make these decisions for their kids...its a lot of pressure to get it right.

Slow Down Please!

May 12, 2014

Anyone who really knows me, knows I will do anything and everything for my children.  And many, MANY times I have had to be the proverbial "squeaky wheel"  in order to provide them with something they need.  Well, this was one of those things that shouldn't have needed the extra "squeaking" from me.  For about 6 months I had been calling the road department requesting signs be put up alerting drivers that a blind child lived in the area in hopes it would help people slow down and be attentive if they see the kids playing outside.  I know not many people truly pay attention to road signs anymore, its sadly the nature of our generation.  But if it helps one person slow down, its worth it.

I cried when I saw the signs, it was a mix of emotions.  I felt relived that they were finally put in place, but also sad that they were needed in the first place.  I so often look past the reality of Emily's lack of vision because I just see her, not her disability.  She is not a blind child...she is a child who is blind.  Her disability doesn't define her.

But in this case, for the sake of community awareness and her safety, I'm ok with the words "Blind Child".

Friday, January 9, 2015

The Strength Of A Child

As the mother of a special needs child, one of my biggest fears is how other children will treat her.  I want to protect her from being teased, made fun of and having her feelings hurt by kids who don't know or understand why she is different.  While I can try and prepare her for it, I can't prevent it from happening altogether.  But one thing I have learned is that Emily seems to already have more inner strength and maturity than I could ever imagine.  And that's not something that can be taught or learned, its just who you are at your very core.  And Emily's true spirit shines through in everything she does.

With everything she has been through, I wouldn't blame her for being sad, feeling disconnected from other children her age or frustrated by her visual limitations.  But she isn't any of those things.  She is happier than any child I know and isn't limited by her disability at all.  Independence is in her nature, she will never ask for help unless she absolutely needs it.  Instead of being sad about what she might not be able to do...she is proud to show you what she can do.  No one can tell her she can't do something, because she will prove you wrong every time.  

Over the last few years, I have caught myself holding my breath when in various settings other children ask her what is wrong with her eyes.  She very matter of factly will say "I was born blind and have had surgery on my eyes so I can see"...she gives a simple explanation and moves on.  Pass me the purple crayon please!  That is HER words, not mine. I've never prompted her on what to say to someone who asks her about her eyes, she comes up with her own answers and she NEVER feels sorry for her self. 

One of the best things I've heard her say happened at one of the first Girl Scout meetings she ever went to.  One of the girls she didn't know said to her "You only have one eye".  She says ""

God I love this girl!


February 21, 2014

Its been 6 months...

Today we returned to see Dr. Zaidman for a regular follow up.  I wasn't too concerned because we had just been to see Dr. Kane a month ago and everything was, for lack of a better word, stable.  Her eye pressure was 15 or 16 and Dr. Zaidman usually never checks it because his main concern is the cornea.  If we hadn't seen Kane recently then he would check it, but I didn't expect it this time.  And I certainly didn't expect for some random woman who I've never seen before to basically insist that she check it!

Let me back up a second...

Westchester Medical Center is a teaching residents have often seen Emily and gone over basic history before we see Dr. Zaidman on any given day.  In the past we have had some good and some not so good residents.  I don't mean that the not so good ones were horrible doctors, just that they have probably not had much experience with young children with eye diseases.  Some would talk very easily with Emily and ask her what her favorite tv shows or characters are, others have talked to or treated her like she was an adult...hello she is 6...try understanding that your patient doesn't understand what you are talking about...and she doesn't know who the hell you are.  Residents are taught that they need to know some of the patients medical history before they go into the exam room...its why the charts are on the outside of the door and not inside on the desk.  It's a basic medical principal.

Ok, so based on all of our past experiences over the more than 6 years we have been seeing Dr. Zaidman, never in my life have I been so down right disgusted by how someone in his office has treated me or my daughter.  We were called into a room and this plain clothes woman walked in with Emily's chart.  She sat down and said hello to me, not even acknowledging Emily who was sitting in the exam chair.  I had never seen her before. She never introduced herself and was wearing office attire clothing, no white coat to designate her as a resident or doctor.  She opened Emily's chart and without looking very long, started asking about what medications she was on.  I told her, and she corrected me.  I said no...she hasn't been on that medication for a long time.  It was just the two I mentioned.  She said, oh, that's what it says here in the chart.  (For reference, Emily's chart is about 4 inches in thickness and probably should be transferred to a binder.  just like her, that folder has been through hell and needs some TLC), So chances are the page she flipped it open to was from months or even years ago.  She didn't ask me any other questions and then started to do the eye exam.  She asked about the transplant in the right eye...and then proceeded to have Emily cover her right eye and asked her to follow her pen light.  Are you SERIOUS??? At this point my blood pressure was starting to reach a boiling point.  SHE IS BLIND IN THAT EYE!  I told her she can't see anything out of that eye, her retina detached almost 2 years ago and she had a clear prosthetic conformer shell in at the time.  She said "oh, can she see any color or light?"...NO SHE IS BLIND! I then proceeded to ask her if she was a resident.  She said "No, I'm Dr. Zaidman's technician".  In my mind I said to myself - What the HELL does that mean?!?

She continued with the exam, turning the light off and asking her to read the eye chart (set for normal 20/20 vision) that was being displayed on the wall across the room.  I immediately said she can't see that, she only has functional vision in one eye and usually Dr. Zaidman uses a handheld eye chart so it can be close to her face.  She said "oh". Let me go see what I can find.  She turns the light on and fumbles for a photo chart...not the one with letters.  I said "Emily can't see well enough to pick out small black and white photos, she needs the one with the various sized letters".  Her response was "oh, ok. Um, let me go find something I can use".  At this point I was ready to just get up, grab the chart and walk out.  This woman knows NOTHING about my daughter and obviously didn't read the chart at all!

When she came back in the room with a letter chart, she held it about 5 feet away from her.  She couldn't see anything.  I had to intervene again and tell her she needs to hold it up close, like less than 1 foot away from her face.  "Oh, ooooooookay" she replies with a condescending tone.  She allows Emily to read off a couple letters before just giving up and moving on.  Next, was the issue of eye pressure.  She told me she, once again, had to leave the room to get the new tonal pen.  I said No, that's ok, I was just at her glaucoma doctor a few weeks ago and her pressure was fine and that Dr. Zaidman doesn't always check her pressure.  She insisted she get a reading.  I again said No and reiterated the fact that I was just at Dr. Kane's office and her pressure was fine.  She again insisted, saying that the new device they had was super easy to use. I described the one Dr. Kane uses and she said its slightly different.  I agreed to "See" it, just to appease her, but had no intentions of actually allowing her to do it.  She left the room, for the 3rd time, and came back with the new "device",  As soon as I saw it I said, "OH NO, I DO NOT WANT YOU USING THAT ON MY DAUGHTER". This device looked like a C Clamp on a handle with a needle on one end of it.  That was the last straw.  I was NOT going to let this ill prepared, uneducated excuse of a medical professional (if she really is one) put that thing anywhere near my daughters only seeing eye!  I was LIVID!  It took all the energy I had to not seriously roll this woman under the bus the second Dr. Zaidman came in.  He obviously had talked to her because he asked me what the pressure was when we saw Dr. Kane the second he walked in.  I happily replied 15-16, and that was good enough for him, end of story.

He brought the woman into the room for a few minutes while we discussed the 21 - YES WOMAN...TWENTY ONE surgeries that she had been through and what my concerns were.  Dr. Z and I had some friendly banter and he spoke to me as if I were a colleague, not just the parent of a patient.  It was probably enough to make her feel like a fool for not knowing anything about Emily.  Maybe after hearing how delicate this case is, and what Emily (and her parents) have gone through, she understood why I was so adamant about her not laying a finger on her.  I decided her self humiliation was probably enough punishment for the day and never said anything to the doctor about how I really felt.

Seriously, the girl is Blind and no she can't see your damn light!

During his exam he found that the cataract was unchanged but the cornea was slightly more cloudy than it was 6 months ago, a sign that it is beginning to deteriorate.  He hinted at another transplant being a possibility down the road, but it wasn't something we needed to immediately consider.  Hearing that wasn't easy.  No change in eye drops, maintain status quo and come back in another 6 months.  After hearing the word transplant being tossed out there, 6 months definitely seemed too long.  Now I was scared...

I silently cried most of the way home.

Acts of Kindness

February 9, 2014

A sincere and heartfelt Thank You to the Kinnelon Knights of Columbus and everyone who once again came out to support Emily at the K of C breakfast!  Although many of you don't see Emily very often, we find great comfort in knowing you all continue to keep her in your thoughts and prayers. It's during these difficult and emotionally trying times that we need to draw from the love and support of our family and friends to help get us through. We appreciate all that you and the Knights have done for Emily more than anyone can possibly know. There just aren't enough words to express how thankful we are for all of you. God Bless! 

This photo was taken in Sept. of 2013 after Jason rode in a bike-a-thon that raised funds for the Seeing Eye, a company that trains and provides seeing eye dogs to the Blind and Visually Impaired.  They sent Emily a stuffed seeing eye puppy, who she quickly named Sophie :)

Mom Guilt & Tacos

January 2014

The year started off cold.  Our schools had some delayed openings due to the below zero temperatures that the Polar Vortex brought to NJ.  It was the coldest I remember it being in an extremely long time.  I decided that although I considered  myself a winter person...I was now becoming a fair weather winter person. Which in my opinion meant I wanted it to be cold enough to snow, but warm enough to walk to my car without getting frostbite.

Jan. 13, 2014 - Emily was due to see Dr. Kane again for a pressure check.  I was nervous because we really hadn't seen him since we made the decision to postpone the cataract surgery and I knew he was pretty set on the opinion that she needed it done.  I also had MAJOR Mom Guilt going on.  It had been over a year since she first saw the Ocularist and received the prosthetic shell and Emily wasn't wearing it.  I was terrified by the thought of ever hurting her and I didn't want to cause any further anguish over it.  Em always fought me, keeping her eye squeezed shut when I tried to put it in. She would cry and say I was hurting her, that the lens hurt her eye.  But I knew she wasn't even giving it a chance.  I couldn't get it in at all, so how was she supposed to get used it it?  I bit the bullet and brought it with me to Dr. Kane's office with hopes he could put it in and help her understand that she needed it.  We got there and my inherent need to "over explain" everything kicked in.  When he asked me about how she was doing, I told him she was good, that all her teachers felt that her vision hasn't changed at all and that we didn't feel the risk of her losing the vision she had now wasn't worth it..blah blah blah. I went on to say how awful I felt for not making more of an effort to get Emily to wear the lens, but it wasn't something I could comfortably do by myself.  Then I slunk into the back in my chair and held my breath. It occurred to me that the cataract may have gotten bigger since we saw Zaidman in August and that I may have just stuck my foot in my mouth.

After all was said and done, her eye pressure was good and Dr. Kane didn't feel the cataract had progressed much, if at all.  We discussed the surgery again and his thoughts on if/when it needed to be done, that he would take a "don't rock the boat" approach to the thought of putting a lens implant in.  It would be a longer more invasive procedure and anything more than what was necessary was an added risk to both the health of the cornea and the function of the Trabecolectomy that was maintaining her eye pressure.  I personally believe he was also being cautious because too many procedures in the left eye, allowed for the eye to become weak and susceptible to further other contributed to the detachment of her retina.  For now, I felt the surgery remains unnecessary and we would continue to monitor the cataract.

Next, the prosthetic shell..
I told Emily before we got there that he was going to put it in, she knew it was coming. Somehow he was able to get it in before she realized what he was doing, but was SCREAMING once it was in. She kept saying it hurt and refused to open her eye.  While I was trying to calm her down, and not cry myself, we talked about leaving it in for a couple days so she can get used to it.  Then take it out for a day and try putting it back in for another couple days.  I agreed and I slowly was able to put her coat on and make our way to the car.  She had calmed down a bit, but refused to open her eye.  I distracted her by talking about where we could go to lunch and by the time we got to the car, she had opened her eye and forgot all about the lens being in.  That's all it took?? Having the doctor put it in and promise her Taco Bell??? Now the Mom guilt was really setting in...I procrastinated for over a year to get her to finally keep the lens in, why did I wait so long to have a doctor help?  I knew the answer...and it still hurts to think about that moment of self realization.  I was stressing about the daily struggles of  having to put the lens in and take it out everyday, it seemed tedious and emotionally draining, The responsibility of making sure she wore it everyday fell completely on my shoulders. I was also in some state of denial.  I knew that this clear lens was only the first step. That the end result would be a true prosthetic eye that was painted to match her seeing eye.  It would be a fake eye, one that she would wear for the rest of her life.  If she needed a fake eye, it meant she really was blind...and I realized that I hadn't really come to terms with that on an emotional level yet.  This was a reality check for me, one that I could no longer ignore.

The next day or so Emily did great with the lens.  She slept with it in for 2 nights and then I took it out to clean it and give her eye a rest.  Putting it back in was not easy...but it was better than any other time I tried.  We left it in for another couple of days and continued to do this for a couple weeks.  Pretty soon she was wearing it more than she wasn't wearing it...a HUGE victory for her and for me.  The next step was to give her time to get used to it and then make sure it was the right size and shape that the painted one would be.  Baby steps...and more tacos I guess.

2013 Update

I am in complete shock that the last time I posted was 20 months ago...seriously...April, 2013 was the last time I posted here?  That can't be right.  Actually I am not too surprised, since my previous post my world has been what I can only describe as a series of unfortunate, chaotic and irrevocable events peppered with some sense of normalcy.  And as utterly ridiculous and nonsensical as it may be, I somehow am still clinging to the smallest bit of hope that despite all the complications, struggles and "tests of strength" life, and God himself continue to throw at me, something good will come of it in the end.  

Lemony Snicket sums it up fairly well...“Strange as it may seem, I still hope for the best, even though the best, like an interesting piece of mail, so rarely arrives, and even when it does it can be lost so easily.” 

So much has happened in the last 20 months, I don't quite know where to begin.  So much has happened in the time that has passed, so to avoid a 25 page long post I will split the posts up along the way.  Right now I will go back to where I left off.  In April of 2013 Emily was 5, she is now 7.

April 2013
Emily has a cataract in her right eye (her only seeing eye).  In April of 2013 both her doctors agreed that it needed to be removed to improve her vision, but what they didn't agree on was whether a lens implant was appropriate.  My gut was screaming at me...something didn't seem right.  I was not given a confident answer from either doctor that removing the cataract would actually improve her vision.  It might in fact give her less vision.  And given the fact that she would need thick lens glasses to see or do anything, she may also have a lower quality of life than what she currently had was certain.  So I did some homework.  I spoke with her teachers and aides at school, her dance teacher, her gymnastics coach and most importantly her visual therapist Terry.  I asked the most basic of you think Emily's vision has deteriorated?  Do you feel she is seeing less than she was a few months ago?  The overwhelming answer was NO.  I had an in depth conversation with Terry about the surgery and opinion of her one doctor to not put a lens implant in, and she agreed with me that it just didn't seem worth the risk of losing what she already had.  Why would I take away the vision she had now and dramatically change her ability to function independently if it wasn't necessary?  If she wasn't going to have BETTER vision after the cataract removal, why do it at all???  So it was decided...for the first time since she was born, I was going against what her doctors were recommending, what they felt was best for her, and saying NO to the surgery.  I called Dr. Zaidman's office and explained to his secretary that we just didn't feel that now was the right time to do the surgery and that if in the future the cataract became a real and measurable hindrance to her vision that we would reconsider it at that time.  By nature, cataracts grow, not only in size but in thickness.  So if it became larger or more opaque, changing her ability to see, learn and function on a daily basis, it would be medically necessary to do the surgery.  Until then...its an issue of "just because you can, it doesn't mean you should".  My Facebook post on 4/17/13  says "made a tough decision today...the point is to maintain the best vision she possibly can have and if removing the cataract will take that away, I can't justify doing it.  I have been emotionally a complete mess for over a week, and making this decision has given me peace."  

July 25, 2013
Every year we spend a week at the Jersey Shore in Ocean City.  Each year brings special memories, both happy and sometimes sad.  Emily's first trip to OC in 2008 wasn't without drama...we were struggling to control her eye pressure in her left eye and had a new compounded prescription FedEx'd down to us.  She had an allergic reaction, eyes red and swollen.  That same year she had been on Prednisone , an oral steroid, to help reduce the swelling in her eye due to high eye pressure.  It made her blow up like a balloon and brought multiple comments from beach goers and passers by about "how she must love to eat".  It's sad looking back on those photos and seeing her so chubby, knowing it wasn't her fault and seeing her left eye bulging almost to the point of looking grotesque.  Our summer vacations seem to never be without without some kind of crisis.  This particular summer brought an unexpected visit to the local Emergency Room.  Emily had thrown up a few times, developed a fever and then a strange rash that seemed to continually spread over her body. Do you know how frustrating it is to explain a rare eye disease that no one has heard of or dealt with to an ER doctor who is treating a non eye related issue???  It seemed like they cared more about what her eye issue was than to why she had a fever and a rash.  Mumps, Measles, Fifths Disease...all things I questioned.  I called our pediatrician at home twice...could this be a delayed reaction to shots she had just days before we left for the shore? "No, a reaction would be highly unlikely this far away from the injection date".  So after spending almost an entire day in the ER, they released her with the tentative diagnosis of "Roseola", mainly because they couldn't pin point anything else.   I didn't buy it for a second.  All 3 of my kids had this as babies.  The rash only appears AFTER the fever breaks and it spreads from top to bottom or bottom to top and goes away in the same order it showed up.  This rash started while she had a fever of 102, which she still had when we arrived at the ER.  And it showed up almost all over at the same time.  In fact the rash got darker during the following days.  I did my own research and came up with "parvo virus".  It presents the same symptoms Emily had (and more) and I was convinced that was what it was.  2 days later...a friends son (who was visiting us at the shore before Emily got sick) came down with it, a few days after that, so did his father.  And so did Jason, myself and Tyler.  The worst part of the virus for us was the massive headache that accompanied the nausea, fever and rash.  I will NEVER go to that hospital again and wish I could sue for malpractice.  

August 17, 2013
Emily began learning Braille only a couple months after she lost all vision in her left eye.  Jason and I felt we needed to somehow represent her and show our solidarity for what she was going through.  We decided to get matching tattoos that say "Emily" written in braille on our left wrist. (Jason's wrist is pictured below) It serves as a constant reminder of both her reality and her strength as Braille will become her main source of reading and writing as she gets older. It will become a way of life for her. I love that some people see it and want to know what it is and what it says. Yet other people think its a barcode of some kind?!? (true story)  Either way I get to tell anyone who asks about it how strong my little girl is, and that makes me proud.

August 26, 2013
As I went into Dr. Zaidman's office I held my breath...or at least it seemed like I couldn't breathe.  It had been 4 months since we had made the decision not to have the cataract surgery. Was that the right choice? 

The answer was good news, nothing had changed.  Her cornea was still a little cloudy, as it was 4 months prior, but the cataract was still the same size.  Her vision (right eye only) was in the 20/400 range which is about the same as it had been for the past year.  He said he didn't need to see her for 6 months unless there was a problem.  That was so scary for me because we have always gone so often that it felt like a huge gamble to wait 6 months. What if something was wrong and I didn't realize it or what if her pressure was elevated?   I knew that if I saw anything that seemed even a little bit off, that I would have her seen right away.  I PRAYED we could go 6 months without any problems.

September - December 2013

9/5/13 - Emily's first day of Kindergarten! 
My brave little girl was so excited!  I cried and was SO VERY PROUD!

Happy 6th Birthday Emily! 
Where has the time gone?!?!



New Years Eve - 2013

We spent the night at home with the kids playing video games.  It had been a difficult year in many ways, some because of challenges Emily faced, most of them for other personal reasons.  I just wanted the year to end...and move into a new year on a more positive note.  Don't we always do that on New years eve?  Say that next year HAS to be better than this year was?  Why does each year have to be so full of hard times and sadness? It was particularly upsetting for me because I so desperately needed 2014 to be a good year, full of good things for myself and my family. But that's the funny thing about life, you never know what it will throw at you next.  Good or have to just do the best you can to get through it.