The Space Between
Posted Aug 25, 2010 11:58am
Good news....bad news.... and everything in between.
As most of you know, we made it to Reston safely. We've been staying in a campground and have not had access to the internet. We're sitting in Starbucks with our beautiful blue eyed angel and he's playing quietly with his Star Wars Toys.
Yesterday changed our lives. We no longer have any control as to what will happen with Kaden. Dr. Abdallah has performed several tests and studies already and shared with us that Kaden is his most severe patient. He said that we are "chosen" by God to take care of Kaden and we must be at peace with what comes our way.
Kaden was diagnosed with pure autonomic failure. You may need to Google it to understand what this means. Kaden was also diagnosed with Autonomic Neuropathy. He is completely sympathetic dependent now. The medicine used to treat this is dangerous for Kaden. All of his organs are now compromised. As though this wasn't enough to find out....Kaden needs to be seen by a molecular genetisist. He has cAMP deficiency. We can't even begin to tell you how rare this is on top of everything else. Dr. Abdallah said that he will spend as many hours as he can to coordinate a plan for our little boy. He trusts that Kaden has a great purpose and that he will make it. However, not in Colorado. So...we are in limbo. Many would say "pick up and move" but it's not that simple. We need to return the RV by the 1st of September (not because of Tim and Traci, but because it is bank-owned), maintain an income (which means Brian will have to fly back to Colorado and work or find a job here), and find somewhere to stay here (either the RV, a hotel, or a house).
Ronald McDonald house only approves guests if their loved one is in the hospital. To make things even more complicated, insurance isn't paying our nurse. Kaden's nursing agency is doing NOTHING to correct this. It was their responsibility to have this approved and according to the State of Colorado, they dropped the ball. So today will be a day of coordination, advocacy, phone calls, and prayer. We will grieve later. No time for tears. Time to focus on the space between. Love to all of you.
As most of you know, we made it to Reston safely. We've been staying in a campground and have not had access to the internet. We're sitting in Starbucks with our beautiful blue eyed angel and he's playing quietly with his Star Wars Toys.
Yesterday changed our lives. We no longer have any control as to what will happen with Kaden. Dr. Abdallah has performed several tests and studies already and shared with us that Kaden is his most severe patient. He said that we are "chosen" by God to take care of Kaden and we must be at peace with what comes our way.
Kaden was diagnosed with pure autonomic failure. You may need to Google it to understand what this means. Kaden was also diagnosed with Autonomic Neuropathy. He is completely sympathetic dependent now. The medicine used to treat this is dangerous for Kaden. All of his organs are now compromised. As though this wasn't enough to find out....Kaden needs to be seen by a molecular genetisist. He has cAMP deficiency. We can't even begin to tell you how rare this is on top of everything else. Dr. Abdallah said that he will spend as many hours as he can to coordinate a plan for our little boy. He trusts that Kaden has a great purpose and that he will make it. However, not in Colorado. So...we are in limbo. Many would say "pick up and move" but it's not that simple. We need to return the RV by the 1st of September (not because of Tim and Traci, but because it is bank-owned), maintain an income (which means Brian will have to fly back to Colorado and work or find a job here), and find somewhere to stay here (either the RV, a hotel, or a house).
Ronald McDonald house only approves guests if their loved one is in the hospital. To make things even more complicated, insurance isn't paying our nurse. Kaden's nursing agency is doing NOTHING to correct this. It was their responsibility to have this approved and according to the State of Colorado, they dropped the ball. So today will be a day of coordination, advocacy, phone calls, and prayer. We will grieve later. No time for tears. Time to focus on the space between. Love to all of you.
Brian and Julie
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