Sunday, February 8, 2009

Dr. Lee and CHLA

This past Friday, Troy, Gavin and I hit the road at 5:30am for Children's Hospital. We had the 8am appointment with Dr. Lee. It was a wet, rainy morning. A little ironic, because when we left the appointment a few hours later, I had a sense of hope and things seemed brighter. The anxiety I have been experiencing is a little new to me. I have never felt this gut-wrenching feeling in the pit of my stomach before. It was prevalent that morning, when Troy pulled up to the big underground parking structure, I had to jump out of the car - I was sick to my stomach.

I know I am going to be learning so much about myself, my family and life in general. This 4 month old little boy is posing to already be a sense of my inspiration. Just walking into Children's Hospital, and seeing these cancer stricken little children, makes what we are facing a little more manageable. Children walking the lobby with their exhausting, tired-eyed parents holding their vomit bowls - made me feel like we did not belong there. These parents are fighting for their son/daughter's lives, and we are fighting for our child's vision. I felt like I wasn't even on the same playing field as the other suffering parents. Not that my son's condition is not severe or unimportant - but I don't have a fear of losing him. I have never been in such close proximity to other families who are suffering. It is a very humbling experience. When you think you're having a rough day - go to Children's Hospital and just walk the lobby. You will get back in your car with a different appreciation of your problems.

Sorry for the diversion, I had to get that off my chest.

We were whisked away to our examination room close to 9am. Gavin's eyes were dilated by the very nice nurse Anulao who was very gentle with him. We waited another 30 minutes and Dr. Lee's assistant came in and performed an initial exam. He informed us of the findings. He saw the same thing our first specialist had found earlier that week. Lesions on the retina. He went into detail, asking if we had a cat, if my pregnancy was normal, etc. The question of the cat is due to the suspicion of possible toxoplasmosis. Of course that was my biggest concern. This toxoplasmosis can affect other areas of his body and lead to developmental problems, etc. I had been racking my brain all week wondering if the cause of Gavin's problems was from an infection. Were my baby's eyes healthy and normal at one point, and did something go terribly wrong? Did I have this toxoplasmosis? Do I still have it?

Dr. Lee entered the room, and instantly a calmness came over me. I can't explain why, well, I can explain why - this man is amazing. He has a demeanor to him and a vibe he exudes that is unexplainable. All of this with just a "Hello, nice to meet you, I am Dr. Lee."

He examined Gavin, he spoke to the first doctor/assistant and then began to go into detail to us about the eye on the big 3D eyeball on the wall. He explained the intricacies of the eye, the layers, the vessels and many more complex structures. I am floored by the human body in general, I always have been. To see what exactly has to go right during cell formation for humans to be humans is miraculous. Everything has to be just right for us to talk, see, hear, think. The slightest flaw and speech is impaired, sight is compromised or even non-existent. I am amazed at God's work. It is nothing short of miraculous and I am in awe of how we work and how we are 'put together'. Dr. Lee confirmed these thoughts, as he pointed out every tiny area of the eye and how one structure leads to the next, and one slight misfire - sight is not normal. He explained how Gavin's lesions are affecting his central vision, and that our son would probably never see 20/20. Or whether he would be able to see much of anything, ever. I sensed the urgency in his voice. I also sensed some hope. He never once said he can "cure" him, he never once said our son will see, but my hope was increasing with every minute that passed and with every word that left his lips.

Dr. Lee and his team of doctors are going to perform an Electroretinogram (ERG) on Gavin at 6 months of age. This procedure will take place at CHLA, under general anesthesia. It's about an hour and a half procedure - and will give us some answers to many questions. It will tell us what he can see, it will allow the doctors to examine the actual lesions in much more detail, and see many other things his examination did not show. It will also inform us if Gavin is the candiate, Dr Lee thinks he may be, for his new research clinical study. This particular doctor is well known for his clinical studies in moving forward to finding cures and answers to retinal disorders.

I am hoping Gavin is a candidate for this study. I hope Gavin can be part of the greater picture. Even if this study doesn't help him, but helps just one more family, one baby, I would be so proud. I would know this is our reason. I know Gavin is part of something greater, and something I can't even begin to imagine right now. I may not be ready to understand it quite yet. I do, however, understand this is just how God intended. I am ok with that. I am saddened with the very real hard facts. I do not wish this on anyone. I don't wish 4 months of wonder and concern before the diagnosis on anyone. I can't even begin to imagine what parents go through when their children are faced with life-threatening illnesses. If you were to tell me 10 years ago, I was going to have a son, and that son would have little to no vision, I would have told you, there is no way I can manage that, there is no way I can deal with that. I am surprised with what we are capable of when faced with adversity. To understand it was with us all along, is the ticket to bigger thinking and greater understanding.

Pieces of who I am, as a person, a mother are beginning to slowly be put together. I am looking into trying to find the right resources to begin a non-profit organization that goes towards research. I am extending my heart out to families, whom I don't know, as an advocate. I am trying to find all my DNA books (I have a huge fascination with genetics and always wanted to be a geneticist). My handbook to teaching yourself braille has been ordered. Pieces of who I always knew I was are slowly emerging just in the past week. I have supressed many things because of my lack of knowledge, or where to start. You start by starting. You take the first step towards making things better and worthwhile.

My children are my God send. I will fight tooth and nail for their well-being and Gavin has put his mom on a mission he can't even begin to understand.


  1. My darling Jen ~
    I am at work, it's 7:15 on Monday morning and I believe I feel a bit of your sadness. Thanks from the bottom of my heart for including me in your blog (which, of course, you do wonderfully well) and letting me travel along with you on your journey.
    All my love,
    Cheryl - TMI

  2. Oh Jen, I just want to let you know that I'm praying for sweet baby Gavin, You and your husband. Praying for strength for you two as parents, comfort, wisdom for the doctors and healing for baby Gavin. Nothing is impossible for God. I love your already strength and attitude as you've poured our your heart in the post. I'll continue to pray for that as you all go thru this process. Huggs.

  3. Your children are not only your God send, they touch us all with their love. The love, prayers and support that surround you will hopefully fill the 4 of you with undaunted faith and strength.

  4. Hi Jennifer...My name is Shannon and I have been a friend of Troy's for many years (I got Gavin's blog from his facebook page). I just wanted to say that even though our situations are different, I can relate to everything that you are feeling right now; wondering if it was something that you did, if you could have done something different to prevent this and most importantly believing that you were dealt these cards for a reason. My youngest daughter Carlie was born with a complex heart defect that required her to have three open heart surgeries before she was two years old. When we were first given Carlie's diagnosis, a poem was shared with us that I'd like to share with you...

    Welcome to Holland

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

    I'll be keeping Gavin in my thoughts and prayers..."If God brought you to it, He will bring you through it".

  5. When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.--Pauline R. Kezer

    Jen and Troy! This quote really sums up what you both are doing. You are getting involved and becoming students of hope. We love both of you and your wonderful children, Landon and Gavin. May we not forget that big brother will be a loving force in Gavin's life, as well. We were saddened by the news, but we always have hope. We are here for all of you and will continue to visit your blog to keep current on the latest news. Jen, you are doing a beautiful job of keeping everyone informed and in touch with your feelings. We know that Troy is right there with you and is supporting you and the boys daily. Know that we are here for you and do not hesitate to contact us if you need anything!

    We love you all,

    Jack and Shirley Martinez (the other grandparents)


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