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Friday, March 12, 2010

Sign us up (LCA Conference)

We are signing up for the LCA Conference this weekend, that will take place in Philadelphia. We have decided to not take the kids. I want to be able to take my time and really talk with the doctors, researchers, as well as other families and that can be challenging with an impatient 5 yr old and a stubborn 17 month old! I know they will have child care, but to me, I don't want to be rushed in anyway.

Is this not a wise decision? Anyone else been prior? It would be nice to take Gavin, and for him to meet other LCA families. But then I wouldn't want Landon to feel left out. Blah blah..

I will also post this on the Yahoo Group email list and see what I get back in responses.

I am SO excited to connect with other families and hear and learn from them. I am still so new to this arena, and there is so much wisdom to take away from a conference like this, I am sure. I can't wait to hear what is next in the line of trials, and also get to meet many of the wonderful parents I have connected with in the past year.

My HOPE, and I pray about this everyday is that we get the genetic mutation figured out and sent to me prior to us boarding that plane. They said it would take approximately 7 months for Phase 1 (his blood is at the Carver Labs) to get back to us. We submitted his bloodwork in the middle of December, which puts us right in the middle of July as being our 7 month mark. The conference is the end of July!

Talk about timing. :) This conference takes place every 2 years, and it would be our luck to receive his genetic information the day we get HOME from the conference!


  1. We are going! And we are not taking any of our kids. I talked to the lady in charge, and since I don't need a doctor's appt. for Finley, or bloodwork for Carver, then no reason to bring her. At our kid's ages, it didn't make sense. When she is older, she can come.

    We can't wait to go! We sent our bloodwork to Carver in August, 2009, and we are still waiting. That has been 7 months...and Mat and I were just requested to send in blood because they think they found something. SO! That means it takes between 7-8 months, and they said up to 9. SO LONG!!!

  2. I so agree. It makes sense if the kids were older, plus we also do not need any exams/blood work, ERG's etc. We can't wait to go, either. I am looking forward to the entire experiene. I'm sorry you have to still wait, but on a good note - sounds like you're on a good track if they found something! We are so anxious too... UGH.. these months seem forever. :)


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