Monday, June 6, 2011

Time for a quick update.  John was out of town all week last week for work, so I've been a little occupied lately.  Anyway, where to begin...let's start with some great news that has come as a result of many wonderful people.  The numbers are in and we have just hit our first goal of  $10,000!  Amazing!  Thank you so much to everyone who has helped us earn money for the genetic testing.  In light of all that is happening with Dr. Crow in England and the recent findings, I'm not sure what exactly we will now be needing, but I know that the money is now here whenever we need it.  Any money above and beyond what we need for testing for the kids will go toward research into a cure as well as the daily needs of these two amazing kids.  Thank you, thank you, thank you all for helping us give them the best life possible while they are here with us!

A little over a week ago, Dr. Narayanan emailed and asked me to meet him so that I could sign the consent forms from Dr. Crow to get everything started.  I went up that day, signed the papers, and had a great conversation with Dr. Narayanan.  I asked him a couple of questions and he grabbed a piece of paper and began explaining things a bit more to me.  He described more of what they are seeing in Bryce and Annalise and what they are looking for (with pictures...perfect for this visual learner!).  He showed me what Dr. Crow will be doing and explained that while Dr. Crow is working with the DNA, Dr. Narayanan is going to be working with their RNA to see what he can find and then once we get the results from England, they will be able to compare notes.  Just a few days ago I got an email from Dr. Crow saying, "We are just working up the new technique looking for deletions, and hope it will be operational in the next couple of months (sometimes these things take longer than one would wish however)", so it looks like it may be a couple of months before we have any further news.  It's all so new that they are both just trying things out and hoping to find what they are looking for.  It is amazing to be a part of this.  I am so thankful that we are working with such fantastic doctors.

As I sat listening to and learning from Dr. Narayanan, I couldn't help but feel an overwhelming feeling of how "big" this really is.  How incredible we as human beings are.  I've always believed in God and I know that he is in charge of everything that happens with us, but as I learn more about what is going on, even with just our little family, there is no doubt in my mind that we are such a small part of something so incredible and so well planned out that it is sometimes totally mind boggling.  That day I also got an overwhelming feeling that everything is as it should be.  I have no control of this situation that we are in right now...and it is OK, because our Father in Heaven does have control and he can see the big picture while I only see a very tiny piece of it.  I know that we are continually being guided through this journey called life!

1 comment:

Dacia said...

Congratulations on the funds! I know the money will be put to good use.
Yes, God does have a plan for all of us. The plan isn't always clear, but there is one. We just have to trust in God, don't we? You are doing a fantastic job, as wife, mom and nurse!