Tuesday, April 27, 2010

Grand Rounds...


It is with beyond exhaustion that I write this, but the past couple of days have been absolutely incredible days...

When I was pregnant with Abby, I used to pray with complete earnest and everything inside of me that the baby I was carrying would be, for lack of a better term, normal. I had college biology...I was fully aware of the mutations that could occur at the conception of life and as the life was forming in the womb of a woman. I remember leaving Biology Lab one day after learning the basics of genetic inheritance and seriously wondering how anyone had a child who was not significantly genetically altered in the way society claimed as "different". That lecture was brought to my mind numerous times when I was expecting Abby, and I would pray with all my might that she would be okay...

I think of this now and rejoice in the fact that our Lord, our Creator knows us more about us than we know ourselves.

We were later presented with something that I have always feared...something that I truly didn't think I would have been able to handle. But in hindsight, I wonder if I was so afraid of it because my heart had a feeling it was coming?? The Lord does amazing work to prepare you for things you sometimes don't expect. In essence, we had a child with some special medical needs, followed by a diagnosis that was chronic and potentially debilitating. God gave us and continues to supply the grace and measures to approach something that we once greatly feared.

Fast forward to today...

Today has been an incredible day. If you would have told me many years ago that I would someday be surrounded by and introducing to a group of people a doctor specializing in mitochondrial medicine, a doctor doing research in mitochondrial diseases, and the founder and CEO of an organization that is set out to promote research and education for the potential cure of a disease that you can barely pronounce...well, I would have definitely called you crazy. The disease: mitochondrial disease. The disease that affects our son. The disease the my 6 and 4 year old both talk about with ease and pronounce without a problem. Mitochondrial Disease...the disease their little brother has...

Today's Grand Rounds and family meeting at Shands was incredible. The morning meeting with the physicians was well attended and amazing. That was the meeting that made me realize that Dr. Cohen was one smart cookie...not that I had any doubts to begin with, but oh. my. word. that man is smart! He talked about some of his numerous case studies over the years and at length about the genetics of mito, and it was all so interesting and informative.

The family meeting was next, and it was very well attended...more people than we even expected! With hands and voice shaking like crazy, I tried my darndest to introduce each speaker. Dr. Cohen spoke, followed by the mito researcher we have at Shands, Dr. Stacpoole, followed by the CEO of UMDF, Chuck Mohan. It was an incredible meeting all around.

We have some exciting things happening in the state of Florida to bring awareness and education of this disease to light...I hope you join me in this excitement. I truly never knew I would be so excited about such a thing...

12 comments:

Jessica on April 27, 2010 at 10:57 PM said...

Amber, I'm so impressed you were able to organize such an incredible event- well done! You are truly helping our children. Wow, I would have LOVED to hear Dr. Cohen speak...

Roeh Family Update on April 28, 2010 at 12:05 AM said...

GREAT JOB! I am so happy to hear that things went well. Dr. Cohen was the first person who explained mito to us...brilliant man:)

You go girl!

Hugs,
Joy

Heidi on April 28, 2010 at 3:43 AM said...

Sounds great Amber! Ive heard nothing but good things about Dr Cohen. Thanks for bringing awareness!
Heidi & Jack

Carol on April 28, 2010 at 7:37 AM said...

Way to go! Glad it went well! Learn anything new?

Laura aka Mama Ham on April 28, 2010 at 10:41 AM said...

Great Job, I'm very proud of you!! Big Hugs...

Amanda on April 28, 2010 at 1:19 PM said...

"But in hindsight, I wonder if I was so afraid of it because my heart had a feeling it was coming"

Gosh Amber you could not have worded that any better...

Jen on April 28, 2010 at 4:00 PM said...

"But in hindsight, I wonder if I was so afraid of it because my heart had a feeling it was coming"

I must agree with Amanda - very well said. Congratulations on such a successful gathering!

hobbsfamily on April 28, 2010 at 5:15 PM said...

I wonder the same thing many times - we had looked into special needs adoption after losing two pregnancies including twins after Michael (who had yet to show any significant problems - he was only about 15 months old). God was certainly preparing our hearts for our 3 mito kiddos!

Amber Greenawalt on April 28, 2010 at 5:33 PM said...

Way to go Amber! I am so glad your meetings were a success! How did you like the Airplane analogies? ;)We had Dr. Cohen for Grand Rounds in November and he was awesome. He did Chapel Hill, Charlotte and Columbia for us...What a guy!

And I heart Chuck! :)

Are you going to symposium?

Amber on April 28, 2010 at 5:44 PM said...

LOVED the airplane analogy! I understood it so much better than his typical car motor analogy. :) I typically get lost in that one. And I heart Chuck too!! Isn't he just so incredible?! His wife came with him, and she was super sweet. I had the awesome privilege of walking them back to their parking structure, so we had a little 10 minute "getting to know you" session on the walk, and they are people who I would love to just have dinner with and become friends. :)

Not going to AZ this year, but I plan on going to Chicago next summer. Then it is back in DC the year after that. I was able to go to DC this past summer and LOVED IT!! The national symposium is an incredible experience!!

Carol, I did learn a few new things regarding genetics. Not too much new stuff in regards to treatment or diagnostic workups, but they are continuing to learn more about the genetics of it.

Amber Greenawalt on April 28, 2010 at 7:11 PM said...

LOL! I liked the airplane better than the car too! :)

I met Chuck last year in PA at the UMDF training and thought he was super personable and a GREAT speaker. Makes everyone feel like an important part of the cure. I hope we can get him to come for our walk in September. You know I think we are all really lucky that we have some great folks working for us at the UMDF and even though mito docs are few, the ones there are, are pretty great!

I will look forward to meeting you in Chicago unless we pass your way sooner. We will be in Amelia Island FL in June. ;) I think we will bring the whole fam to the DC one and make a vacay out of it. We just missed symposium last year since Savannah wasn't DXed until August.

Dani on April 29, 2010 at 2:17 PM said...

So glad to hear that it all went well. We were praying that it would be everything that ya'll hoped it would be.

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