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.
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