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 know...mom 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.
Monday, January 12, 2015
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".
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 "Yeah...so?"
God I love this girl!
READ THE CHART!
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 hospital...so 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.
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 hospital...so 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 complications...in other words...it 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.
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 complications...in other words...it 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.”
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 bad...you have to just do the best you can to get through it.
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 questions...do 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!
10/25/13
Happy 6th Birthday Emily!
Where has the time gone?!?!
Halloween
Christmas
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 bad...you have to just do the best you can to get through it.
Monday, April 15, 2013
A Long, Hard Year
It feels like ages since I sat down and wrote about anything that has been happening with Emily. My last post was in October when we first got her prosthetic shell...and I'm ashamed to admit that she still isn't wearing the shell. I am terrified to put it in. She is terrified to let me try. Its something she needs, but forcing her will only hurt her, not help her. I'm overwhelmed by the amount of emotional and physical stress involved in this process. The Ocularist made it a point to say that I should not attempt putting her shell in by myself, so my husband and I need to do this together. Its a process... Talking to her about it a lot should help, but getting her to actually allow us to do it is a completely different ball game. While its not an imminent emergency that she be wearing it right now, she should have been wearing it months ago and TIME IS TICKING. I need to refocus and regroup...but now we have a new issue thrown into the mix. Cataract Surgery.
A month ago we saw Dr. Kane who alerted me to his suspicion that the cataract in her Right (only seeing) eye has grown and is not interfering with her vision. Both doctors have been monitoring this for a while, but we had hoped it wouldn't progress. Sadly it has. Just a few days ago we saw Dr. Zaidman who also agreed that the cataract has gotten larger and more opaque, making it more difficult for her to see through it. Her vision has gotten notably worse (in his opinion) since he saw her a few months ago. Dr. Kane doesn't feel a lens implant would be beneficial at this time because the danger of a longer, more invasive surgery could lead to complications with not only her cornea graft, but also the area where he did the Glaucoma surgery a couple years ago. After failed attempts at 2 Ahmed Valves and countless Glaucoma medications to regulate her eye pressure, he performed a Trabecalectomy, and created a new pathway for her eye fluid to drain from. Her IOP has been stable ever since. If an attempt is made to place a lens implant in her eye, the risk of damaging the pathway is too high. If the pathway is compromised, trying to control her eye pressure again will be a major set back and possibly lead to further deterioration of what little vision she still has. So...what does this mean??? It means that she will no longer be able to focus on anything without the aid of cataract glasses, which have very thick and strong corrective lenses. She may not be able to see well enough without them to get around the house safely, so they need to be worn AT ALL TIMES.
This will be a huge adjustment for her, and for us. Right now she wears protective "cute" glasses with no corrective lenses. But she doesn't like wearing them very often. She takes them off before she even gets home from school and many times refuses to wear them at home. The new glasses she will need all the time, so hopefully the necessity to see when wearing them will bring her to the realization that she can see with them and cant see without them. Remember...she's 5 1/2 - so rationalizing with her is not easy.
Dr. Zaidman will be doing the surgery, but he doesn't feel its necessary to do it right away. He has left it up to us to determine when the best time for us would be. His OR schedule is booked solid through the end of May. So he suggested either June or July, which isn't what I want. I would rather her have the surgery now and get it over with. It will give her time to heal and adjust to life with the new glasses before 1. school field day, 2. her dance recital at the very end of June, 3. Summer 4. Summer vacation at the shore towards the end of July. As an adult we can rectify why our lives would need to be adjusted due to an unforeseen surgery/recovery and lifestyle change. But for a 5 year old, all of those "normal" things are so important. Missing out on something, or not being able to enjoy it the way you normally would, is devastating. I don't know that with the glasses she will be able to dance the way she does now. I don't know if she will be able to do gymnastics with the glasses on. After the surgery she needs to heal AND adjust to a new way of seeing the world at the same time. And to be completely honest...wanting my daughter to be happy, doing things she enjoys and being able to do them with the least amount of restriction is what matters to me the most. The hell she has been through, and continues to go through, is not fair. I don't want her to suffer or sacrifice anything more than she already has. Why is God chipping away at her bright and colorful world????
I came across a photo of Emily this morning, taken ironically exactly 1 year ago to the day. It was last Easter - April 15, 2012. When I took that photo, I had no idea how powerful it would become. It is one of the last photos taken of her before her world became darker. That day could have been the very last day she could see with both eyes. A week later we discovered that her retina had detached and she lost all vision in her left eye, for good. I sat and stared at the photo earlier and cried, just as I am crying now...because she will never get back the innocence she has in that photo. Her world will never be as bright, as carefree or as easy as it was that day. But she is strong, stronger than I ever will be. She is full of Hope and I pray that her Spirit is never broken. Despite her disability, she is her own biggest cheerleader - showing us that she can do anything she puts her mind to and cheering us on to do it with her. She will never know what our world looks like to us, but to her - its her normal and I have to learn to accept it just as she has...
A month ago we saw Dr. Kane who alerted me to his suspicion that the cataract in her Right (only seeing) eye has grown and is not interfering with her vision. Both doctors have been monitoring this for a while, but we had hoped it wouldn't progress. Sadly it has. Just a few days ago we saw Dr. Zaidman who also agreed that the cataract has gotten larger and more opaque, making it more difficult for her to see through it. Her vision has gotten notably worse (in his opinion) since he saw her a few months ago. Dr. Kane doesn't feel a lens implant would be beneficial at this time because the danger of a longer, more invasive surgery could lead to complications with not only her cornea graft, but also the area where he did the Glaucoma surgery a couple years ago. After failed attempts at 2 Ahmed Valves and countless Glaucoma medications to regulate her eye pressure, he performed a Trabecalectomy, and created a new pathway for her eye fluid to drain from. Her IOP has been stable ever since. If an attempt is made to place a lens implant in her eye, the risk of damaging the pathway is too high. If the pathway is compromised, trying to control her eye pressure again will be a major set back and possibly lead to further deterioration of what little vision she still has. So...what does this mean??? It means that she will no longer be able to focus on anything without the aid of cataract glasses, which have very thick and strong corrective lenses. She may not be able to see well enough without them to get around the house safely, so they need to be worn AT ALL TIMES.
This will be a huge adjustment for her, and for us. Right now she wears protective "cute" glasses with no corrective lenses. But she doesn't like wearing them very often. She takes them off before she even gets home from school and many times refuses to wear them at home. The new glasses she will need all the time, so hopefully the necessity to see when wearing them will bring her to the realization that she can see with them and cant see without them. Remember...she's 5 1/2 - so rationalizing with her is not easy.
Dr. Zaidman will be doing the surgery, but he doesn't feel its necessary to do it right away. He has left it up to us to determine when the best time for us would be. His OR schedule is booked solid through the end of May. So he suggested either June or July, which isn't what I want. I would rather her have the surgery now and get it over with. It will give her time to heal and adjust to life with the new glasses before 1. school field day, 2. her dance recital at the very end of June, 3. Summer 4. Summer vacation at the shore towards the end of July. As an adult we can rectify why our lives would need to be adjusted due to an unforeseen surgery/recovery and lifestyle change. But for a 5 year old, all of those "normal" things are so important. Missing out on something, or not being able to enjoy it the way you normally would, is devastating. I don't know that with the glasses she will be able to dance the way she does now. I don't know if she will be able to do gymnastics with the glasses on. After the surgery she needs to heal AND adjust to a new way of seeing the world at the same time. And to be completely honest...wanting my daughter to be happy, doing things she enjoys and being able to do them with the least amount of restriction is what matters to me the most. The hell she has been through, and continues to go through, is not fair. I don't want her to suffer or sacrifice anything more than she already has. Why is God chipping away at her bright and colorful world????
I came across a photo of Emily this morning, taken ironically exactly 1 year ago to the day. It was last Easter - April 15, 2012. When I took that photo, I had no idea how powerful it would become. It is one of the last photos taken of her before her world became darker. That day could have been the very last day she could see with both eyes. A week later we discovered that her retina had detached and she lost all vision in her left eye, for good. I sat and stared at the photo earlier and cried, just as I am crying now...because she will never get back the innocence she has in that photo. Her world will never be as bright, as carefree or as easy as it was that day. But she is strong, stronger than I ever will be. She is full of Hope and I pray that her Spirit is never broken. Despite her disability, she is her own biggest cheerleader - showing us that she can do anything she puts her mind to and cheering us on to do it with her. She will never know what our world looks like to us, but to her - its her normal and I have to learn to accept it just as she has...
April 15, 2012
Wednesday, October 17, 2012
Prosthetic Shell...Day 1
Today Emily went to the Ocularist and was fitted with the first trial prosthetic shell. I have been dreading this day, knowing it wasnt going to be easy. Bribes of donuts for breakfast, lollipops and stickers if she was brave and let the doctor put the shell in, or as we are calling it a "lens". She wore the "lens" for about 5 minutes, crying the entire time, saying it hurt and she didnt want it in. It is going to take time and practice for her to get used to wearing it, so we will be working our way up to all day wear, 5 min at a time. If she becomes more comfortable wearing it, we will increase the time accordingly. But the end goal is for her to have it in all day, only taking it out at bedtime. We will be using some numbing drops just before we put in the shell to help ease the discomfort. This is the trial clear shell. The final shell will be hand painted to match her "good" eye once the correct size and shape has been determined. My heart was breaking today just watching her cry and refuse to open her eyes while it was in. So this is going to be a very difficult and emotional journey for all of us.
It looks like a contact lens, but larger and thicker. I wasn't sure what to expect, and until I have tried to put it in, am still uneasy about it. I know she needs this, it will be necessary for the rest of her life. It will be a learning process...many tears will be shed. Both by her and Me too.
I hate this...i really hate this. Most days recently i haven't paid too much attention to her lack of vision, just being as normal as possible. But from now on, her left eye will once again be a daily reminder of how much her life is NOT normal. This is not the life I wanted for her. She will never drive. She will most likely need special assistance in one way shape or form everyday for the rest of her life. Her life will not be easy. And that breaks my heart every second of every day. She will be fine, adapting to whatever obstacles are in her path. She is and stronger than I will ever hope to be.
But today, she was a scared little girl, and i cant help but feel like the innocence of her childhood has been stolen from her.
I love her so much it makes my heart hurt. And as i write this, tears of sadness are falling because she doesn't deserve the life she is being forced to live...
It looks like a contact lens, but larger and thicker. I wasn't sure what to expect, and until I have tried to put it in, am still uneasy about it. I know she needs this, it will be necessary for the rest of her life. It will be a learning process...many tears will be shed. Both by her and Me too.
I hate this...i really hate this. Most days recently i haven't paid too much attention to her lack of vision, just being as normal as possible. But from now on, her left eye will once again be a daily reminder of how much her life is NOT normal. This is not the life I wanted for her. She will never drive. She will most likely need special assistance in one way shape or form everyday for the rest of her life. Her life will not be easy. And that breaks my heart every second of every day. She will be fine, adapting to whatever obstacles are in her path. She is and stronger than I will ever hope to be.
But today, she was a scared little girl, and i cant help but feel like the innocence of her childhood has been stolen from her.
I love her so much it makes my heart hurt. And as i write this, tears of sadness are falling because she doesn't deserve the life she is being forced to live...
Friday, September 14, 2012
Angry Ramblings...
I've never understood why people who suffer, are forced to suffer over and over again. While those who never see the dark side of life, continue to live in ignorant bliss of how the rest of us beg, borrow and steal just to make it through each day.
To all of those who can relate...and when I say this you all will know exactly who you are..
While I may have once thought of visiting Holland ....I never asked to live there.
Holland sucks. No offense to the actual country of Holland...I'm sure its very pretty and nice there. But figuratively speaking, Holland can keep its tulips and windmills.
As I'm typing this it just occurred to me that it may not be a coincidence that in the springtime, hundreds of Tulips sprout up out of the concrete jungle, otherwise known as Manhattan, in front of the Morgan Stanley Children's Hospital. Well played landscapers, well played. Those of us in Holland get it.
Tonight I am angry...
Emily's nightmare will never end...And as her mother, I live in her nightmare even when she is wide awake or peacefully dreaming of some far away place, like she is right now.
And anyone who thinks they can relate to how it feels to live in Holland...you can't. You just can't. Living in Holland is a full time, 24 hour a day, 365 day a year, one way trip to hell. You don't want to know how it feels...so go back to your blissfully ignorant life and be happy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Someone I was talking to today said in reference to Emily and myself... "You don't want to mess with Momma Bear, especially when her baby cubs are involved". She could not have been more on point if she tried. Not just in regards to Emily, but in general I am very protective over my children. They are my love, my life and the center of my world. If they hurt, I hurt. And as a good momma bear should, I will always have the source of that pain dead in my sights.
That's why I have such a strong exterior, I need to be strong for them. When life, and people in their life, continually disappoint my baby cubs, you better believe this Momma Bear is going to stand up on her hind legs and show her teeth. My claws are sharp...if they weren't, what kind of mother would I be?
...Momma bear is watching and I never forget ANYTHING. Especially not while I'm living in Holland.
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