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Friday, July 31, 2009

Great News!

We have been approved! Dr. Lee at CHLA did his magic, and insurance has approved and CHLA agreed. Mumbo jumbo... blah blah blah. I don't know all exact details, but I do know we will be getting the ERG (Electroretinogram) at Children's Hospital LA very very soon. This will confirm our suspicion of the disease, and we can move forward with further blood work on Gavin, as well as with Landon, Troy and myself. The puzzle pieces will finally be put together. We have the end result of the puzzle, which is Gavin and his vision impairment - what we do not have for the past, almost 6 months are the itty bitty pieces. I am beside myself to finally be able to recognize the disease, identify more with causes and begin my work on the gene research. I am totally aware the gene may go unidentified, I get that.

We spoke to some people at the conference in our LCA group break out session. Some have experienced kidney failure/problems as well as seizures and hearing loss. Getting an identification of exactly what he has is HUGE. It will either put my mind to rest, or get on the ball and have continued tests done on Gavin for the above reasons.

Sorry family to hear this on my 'blog'. I finally got a moment to jump on here, and had to share! I could not keep it in any longer. We got word of this late this afternoon, Troy and I are elated.

This has been a very long 6 months of waiting.

Dr. Lee is my hero! He went above and beyond, and did not give up. THANK YOU!

And so our next chapter begins, and I'm so ready to turn the page.

2 comments:

  1. So happy for you guys! What a relief it must be to finally get an answer. Love you guys!

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  2. OH JENN!!!! YOUR PRAYERS HAVE BEEN ANSWERED! I KNOW HOW HEAVY THIS HAS BEEN WEIGHING ON YOUR HEART AND YOUR FAMILY. I AM BEYOND EXCITEMENT FOR YOU GUYS AND THAT YOU WILL FINALLY GET ANSWERS FOR YOUR LITTLE BOY!

    XOXOXO
    ~ NIC

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