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Thursday, September 3, 2009

ERG - complete!

Gavin's ERG was a success. He did great. We started the day with a few bumps, Gavin had a little cold and we were unsure if we were going to be able to proceed with the procedure. He passed his physical, and the nurse cleared him, but the anesthesiologist has the final say. Talk about shaken nerves. The nurse came by and said she wanted to prepare us, but typically a cold is a deal breaker as far as anesthesia. Lovely!

We were paid a visit by the anesthesiologist and she ordered a nebulizer, breathing treatment for Gavin and then she was going to see how he was doing. Mind you, he was already sedated with a liquid sedation, and his eyes were dilated, and we were STILL unsure if we would proceed. UGH! After about 4 hours from the time we stepped foot in the hospital, Gavin got the green light, we kissed him and off he went. My heart feels for all the parents who have to send their child into surgery. His procedure wasn't even evasive, it was very minor, but still major since they had to put him under -- but, that is the worst feeling. A last kiss as he lays in the bed, and gets wheeled off by the team of nurses. My heart sank.

The ERG confirmed everything we had expected. Dr. Lee called us in for a consultation as soon as everything was complete and brought in all the equipment so we could actually see the pictures of his eyes. Fascinating! Both of his eyes are pretty much mirrored copies of one another (a clear sign of a hereditary condition). Dr. Lee has the only machine in the country that will show detailed pictures of over 100 layers of his eye. We were able to view everything, as well as the atrophied areas that are causing his condition. There is a representation of cone/rod abnormalities in the RPE layer of his eye. All of what he saw pointed in the direction of Leber's Congenital Amaurosis. Only blood work detecting the gene will 100% confirm, but basically he did confirm that he has LCA.

The next topic was onto what Gavin can see. The ERG readout on someone who is sighted will have big spikes in activity like an EKG basically. The spikes are the brains reaction to the light. Gavin's ERG was pretty much flat. We were prepared to hear this. I expected it. It is still a daggar to the heart when his doctor is confirming everything. I could tell it was difficult for him to give us this information. I semi-interrupted and told Dr. Lee, we were expecting this news. He put his head down, and nodded and looked at the readout and showed us. There was hardly any activity. I looked at it and looked away and cried. Not that I was surprised, but to get it confirmed, is another layer of sadness in a way? It's hard for me to put it in words. It is fair to say, Gavin is blind. He can detect light, but no visual acuity.

He ended our consultation with a glimmer of some big hope. As I have stated before, science is on the move with finding treatment for blindness. There is not hope that one day there will be research. Research is happening right now, all over the world, and he confirmed with what I have researched, that LCA is a huge area of study. Gavin may be a candidate for a study in the upcoming years, which is wonderful to know.

There is hope for Gavin, and many others who are in the same boat. It's an exciting time in the area of research, and we can't wait to see where it will take us. Thank you for your kind words and messages of hope, from people I don't even know. It helps me to move forward and march on to raise awareness!

Waiting for the physical

"Not liking these funky hospital jammies, mom."

Fighting the breathing treatment, even though sedated. I have a little spitfire on my hands!

2 comments:

  1. so happy that part is over...we have been praying!

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  2. He's such a strong little thing and looks adorable. My heart is heavy feeling your pain.
    You have such a positive attitude but make sure you do your share of grieving when you need to. It helps.
    ~steph

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