Friday, July 30, 2010

A huge bump in the road that we never saw coming

As most of you know Katie wears glasses. She was diagnosed at the age of 2 1/2 with Amblyopia, which is where one eye is significantly weaker than the other. For the past 2 1/2 years we have been patching Katie's good eye on and off, in the hope of strengthening her weak eye. Each time we have patched for a period of time her eyesight improved, only to deteriorate during the months that it remained unpatched.

Two months ago, her eyes had weakened again and the Doctor, who is excellent as well as a family friend, told us that we may have to patch again but that they would strengthen her lenses in the meantime in hopes that it would be enough of a fix that she could avoid the patch. We returned almost a week ago and as we sat and observed the exam, my heart sank. I knew that her eyesight had weakened further. The doctor was quite concerned and he dilated her eyes just to make sure that he was seeing the whole picture. When you dilate a young child's eyes, it is very difficult to really get the kind of visualisation of the eye structure that you get with an adult, since they cannot hold the eye positions needed for very long during the examination.

Marc and I had gone to the exam together (in separate cars) since I had to get to work earlier than he did and he was planning to take her to camp straight from the exam. Once the exam went longer, I left to get to work asking him to call me the minute that the exam was complete. The minutes ticked by and all of the sudden it was well over an hour since we were together. I knew something was wrong...I just felt it...

When I finally heard Marc's voice my fears were confirmed. The doctor was able to view the periphery of the retina and found evidence as to why Katie is not getting better. Unfortunately, it was not an answer that we wanted to hear. There were flecks of material on the far sides of the retina; yellow in color. His concern is that it is a condition that falls under a group of eye diseases called Retinitis Pigmentosa, that will lead to loss of vision and ultimately for many...blindness.

Our doctor has referred us to the best eye institute in the country, which is in our own backyard here in South Florida. The doctor who will be overseeing her case is also considered to be one of the best retina specialists in the world. Katie will be given a test under general anesthesia called an ERG (Electroretinography), which is like an EKG for the eye. It will be a two day process that is already scheduled and it will take place about a month from now. You cannot imagine the process it was to get it done that quickly.

Needless to say....we are VERY upset! We are keeping it together for the kids sake but my anxiety level is through the roof. Every time I think of this child, who takes such delight in every thing that she sees around her, losing that ability.... well....all I can do is cry. Katie lights up the world around her and all I want right now is for her to continue to see the light. If the news is bad once the test is complete, we will do everything in our power to try to find a way to forestall this from happening to her. If we cannot...then we will deal with that too. I cannot believe that I am even journaling this. It is like a bad dream that we cannot wake ourselves from.

I am actually doing so for three reasons; to keep a record of this for Katie and ourselves and to help me to process it; which I do through my writing and also to implore upon all of you to get your children screened early. Sadly, we have no knowledge of Katie's background and heredity. Many of the eye diseases that come under this heading are passed along through the genes. There is no way that you can know where there may be a problem unless you screen for it.

Finally, I ask that you say a prayer of you pray and if you don't, then to send your positive thoughts for our daughter. This is one more bump in the road for her; albeit a huge one. We need all of the friendship and love right now that we can surround her with. She knows nothing about this now and we will talk to her just before the test to prepare her for that. If our fears are realized once we get the results...we will deal with that too. I just don't even want to go there yet.......

24 comments:

Vivian M said...

You have our prayers, our support, and our positive thoughts. I don't think you should go there yet either, cross that bridge if and when you have to.
Sending you all huge hugs.

Yoli said...

I am so sorry, my thoughts and prayers are with your little girl.

M and M Girls said...

I am so very sorry to hear this news. It brought tears to my eyes to know that she has to endure all of this. I am praying for her and will stay very positive. keep us posted.

PrettyMama22 said...

(((Lori))) Having dealt w/devastating news with my son, I totally understand how you feel. It is a horrible feeling, a helpless feeling. You feel faint. I remember that feeling.

We only told Andrew what he needed to know at the time and he preferred it that way too. Nothing wrong with that. While we told him he was dealing with leukemia, i.e producing too many white cells that were hurting his healthy cells, we NEVER mentioned cancer, that word was just too big to deal with for him...and me!

I will keep Katie in my prayers and ask Andrew to help in any way he can. He has helped with many healings. Please know that if she does lose her eye sight, she is still going to have a magnificent life and probably touch even more lives. I know when the worst happened to us, that was the case. I continue to get emails from people around the world that Andrew has touched...even since leaving here.

One thing we learned to do was to live in the moment and appreicate each moment we had with our son. SO don't worry about what might happen and enjoy the moments you have now.

Wishing you and your family the very best!

Abundant Blessings of Health!
Connie

ZhangshuMom said...

Lori: Tears are welling up in my eyes as a mom and your friend, feeling your anguish and helplessness for Katie. Please know that I will pray fervently for good results on test day and for healing of whatever it is that is affecting Katie's vision! We love you both here in Jax.

Love and peace,
Donna and Catherine

dawn said...

Lori and Marc as we cannot imagine what you are going through emotionally and will send positive vibes your way constantly.
Along with those vibes I send to you the biggest hug, with love.

Michelle said...

Lori, I wish I had some amazing words for you but I am at a loss. Prayers for you and for sweet Katie and your family.

Half Gaelic, Half Garlic! said...

My heart sank reading this..... I am so very sorry Lori. I am thinking of you and keeping you all in my prayers.

Hugs to you~

Lisa

Kelley said...

You have my prayers! You are not by the leading eye institute by happenstance, Lori...this is going to work out. Katie could not possibly have more supportive, wiser, loving parents than you and Marc. You will get through this! Thinking of you all,

Kelley

Teresa said...

You are right, don't let her "go there" until you are able to. That way, you can pave the way should the worst be realized. I'm so sorry you're going through this. I will most certainly be praying. My heart just sank for you and Katie.

Candy said...

Katie will be in my thoughts. If you need anything please don't hesitate to ask.

Big HUGS going your way.

SamanthaR said...

Praying for Katie, and all of your family.
Fellow MeiDreamer
Samantha in MN

M3 said...

Oh sweetie -- sending you good thoughts and prayers and huge hugs. What frightening words to hear.

Steffie B. said...

OH Lori.....my heart is pounding as I write....I will lift her up to the Lord and ask for complete healing, strength for you and Mark and a sense of calmness for Katie as she must feel that things are happening to her.

Hugs,
Steffie

recoveryagent2 said...

Lorie, trying to exhale here. Will this affect both eyes or just the one eye? I'm definitely a praying friend and have started already. This little comment seems so trivial for the words and feelings I have. You are loved and you don't walk alone. My aunt was almost blind and totally blind her last years. She was my favorite aunt and her vision never slowed her down. Your burden is heavy on my heart but all our thoughts and prayers are with you daily. We love you. One day at a time, dear lord, one day at a time.

Tammie said...

I don't even know where to begin Lori. Please know that you have our love & support along with prayers & good vibes being sent your way.

When we adopted our children, all we really wanted was to have a child (or children) in our lives to love forever. Who knew the path we all chose would lead us in such directions? Not having a biologicial history is so damn frustrating.

If there's anything I can do to help, please know I'm here for you - even if it's only to listen.

Love & hugs!

Brad Levinson said...

Lori,

I'm really very sorry to read this. I think it's something that hits Jess and I personally, since we're often dealing with our own "anx-eye-ity."

I've been wearing glasses since I was three and a half (I have both severe myopia and astigmatism) and Jess has a "band" around one of her eyes because of a retinal detachment at a younger age. Talk about bad genetics!

In both of our recent dealings with eye doctors (and we both go to quite a few specialists), there are a few things to know:

1) Eye medicine is really coming a long way in a short period of time. This is something that the both of us have experienced. If there were ever a time to come into this world and have eye problems, this is it. Jess was one of the very first people to get that "band" technology that protects her retina from detaching. And Katie is much, much younger than we are, and it's only getting better.

2) A few Google searches (and I'm sure you've been doing the same) seem to show a promising amount of progress on her specific eye disease. It could be that in the worst case scenario, simply playing the "delay game" might be enough to prevent your worst fears from happening.

3) Her hopes, dreams, happiness and future won't be impeded upon no matter what happens, and it won't ever take away her joy for life that you love and treasure. It seems that people with this disease have overcome their struggles and become wildly successful in life. Willie Brown (the former mayor of SF) and even a former child actor who became a Supreme Court law clerk (!) have this.

4) There's something magical about fate sometimes. She's here, in the US, with close access to one of the best eye centers in the world. She's part of a wonderful, loving family who will do everything in their power to help her. Despite what you're all going through right now, that sure is some luck - and more importantly, love - on her side.

Our love to all of you,
Brad and Jess

Invisible Hands said...

Lori, You have really had so much to deal with since I first got to know you! You have handled it all with the grace of an old soul and I love you even more after seeing how you find a way to turn hardship into love. I know you are scared and I'm so sorry you have to go through this. Right now I'm praying the diagnosis turns out to be as benign as possible. Please remember to breathe, and take care of yourself. Katie couldn't be with a better family, no matter what happens!

Also, I have been putting off getting Cami's eye exam done. I am calling for an appt on Monday! The same thing could happen to any of our children, and like you said, without knowing the genetic history, we don't know what they may be likely to have later in life.

With Love,
sherri

Lisa~~ said...

So very scary, sending good thoughts your way.

val said...

How scary. Keep positive thoughts. My prayers are with you all.

Jen@KerrnalJournal said...

How very scary, and a long time to wait to get answers...I will definitely be praying for her, and you too! You have bravely handled so much that has been thrown your way over the last couple of years, and Katie is lucky to have such a strong momma to help her through whatever comes her way.

Hugs,
Jen

Diana said...

I am so sorry!! Katie and ALL of you are in my prayers!! Hugs to all of you..

Chinazhoumom said...

Lori
Please know that our prayers are with you and the doctors - that everyone has what they need to provide the best result possible! She is in good hands and has so much love around her!
Carol in FL

Janet said...

Ironically- I just came to your blog from "raising sungflowers" blog. I am adopting a (legally) blind child from China- I leave the 13th. We do not know exactly what he has- but believe it is Peter's Anomaly. I will be praying for your daughter!