I am more inspired and touched by how many people have contacted us. You have no idea what it means to have the amount of support, love and good thoughts coming to our family. Family. .. friends. .. co-workers... neighbors. .. friends of friends. .. thank you all for your kind words, messages and actions. It means more to us than you will ever know.
We found out that they are doing a dna test for Max at no charge because they want to just confirm this to be true. Our glimmer of hope is here but he is showing a lot of the symptoms of krabbe. 2-4 weeks for these results.
We've had the support of our work places to take the week to comprehend this, and so we have tried to do things with the kids. Lots of walks. .. outings. .. things to get is out of the house so we can breathe. The aquarium was a nice treat for the kids today. Both of them enjoyed it.
We were talking about the crazy year we've had. Josiah's mother was shot at on a freeway with a random act of violence a week before Max was born. Thankfully only her bangs were cut by the bullet and she was fine. Anyone else sitting in that seat wouldn't have had a chance. Max was born on Feb 6... the same day my mother passed away seven years ago. My mom was with me on that day. ..I truly believe it. The crazy parent that I am... we took Max to the er on the 4th of July thinking he may have whooping cough. .. turned out to be a touch of bronchitis. Emma was in the hospital after a 5+ min seizure. ..febrile thank goodness. Josiah was dehydrated and in the er in the fall. And then after Max's 9 month apt we rushed him to the hospital after recommendation from his phenomenal pediatrician which started the search for all of this. I'm ready to say good riddance to 2014 but I also know that each of these situations prepared us for where we are today. While it is not easy by any means sometimes these events can prep you in ways you never thought it could.
The other part of this which is just so crazy is that my brother is researching something very similar in his lab right now to get his phd. It's not the specific disease but rather how certain things in our body work together to create some of these responses.
There is something much greater than I can comprehend in the works. Too many coincidences. Everything happens for a reason no matter how hard it may be. Max has already touched so many people with his incredible spirit. Even if his time on this earth is shorter than many. .. he has already touched my life in so many ways for the better. That being said, I still have a lot of hope for some medical breakthrough or miracle.
Each one of you have touched our lives with your incredible spirit and love. Thank you for all of the support. They say it takes a village to raise a child. ..I have an amazing one influencing and supporting my children's lives. Thank you for being a part.