I am super excited about starting this blog, since I began searching it out and thinking about setting it up permenantly I have found even more cool things about it. I can update it from my smartphone droid just by texting, so that if we are in hospital it will be super easy to keep you all updated with status's and pictures. I can post videos of Charlotte so that all of you can grow with her and see what you have helped hold together. I may post things about our family in general as well for my long distance relatives, friends and followers of our journey. This disease and any for that matter impacts the family as a whole and I don't want Alaina and Jake to ever feel that they do not deserve special devotion.
This year I would have fallen if all of you had not been here cheering me on. People ask all of the time what they can do to help, and most of the time I have no idea. I want to say "well can you fix Charlotte;)?", but praying for her and passing on the knowledge of kids like her will have a very large impact on us all and it has meant the absolute WORLD to us.
My Charley Girl
Tuesday, May 18, 2010
Monday, May 17, 2010
Hi everyone,
I decided that it was time to move our families story to a different outlet. Carepages has been a wonderful way to keep everyone in touch but it is very limiting in sharing photos, isn't always user friendly, and can not upload videos at all. This diagnosis of Charley's is lifelong and although I can't promise I won't change this again, I am hoping that this blog will be a home for us, and a way that you can watch her grow and continue to be part of our journey.
We reached a year out of the hospital on April 24th and for days prior and even now a few weeks after I just can't stop reflecting, I suppose everyday is like this for me now, but every milestone brings it ever more front and center. I just couldn't help but think how far we have come and although nothing has changed within her heart, everything has changed for our's. I hope that through our story, our challenges, or whatever we face with all of you behind us, that we will all learn a little bit about the things that are most important.
So welcome to our new home;) Thank you for supporting us, praying for us and feel free to pass this along to anyone you tell about our Charley.
I decided that it was time to move our families story to a different outlet. Carepages has been a wonderful way to keep everyone in touch but it is very limiting in sharing photos, isn't always user friendly, and can not upload videos at all. This diagnosis of Charley's is lifelong and although I can't promise I won't change this again, I am hoping that this blog will be a home for us, and a way that you can watch her grow and continue to be part of our journey.
We reached a year out of the hospital on April 24th and for days prior and even now a few weeks after I just can't stop reflecting, I suppose everyday is like this for me now, but every milestone brings it ever more front and center. I just couldn't help but think how far we have come and although nothing has changed within her heart, everything has changed for our's. I hope that through our story, our challenges, or whatever we face with all of you behind us, that we will all learn a little bit about the things that are most important.
So welcome to our new home;) Thank you for supporting us, praying for us and feel free to pass this along to anyone you tell about our Charley.
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