Thanks for reaching out to us! In the last month we've taken our son Max to see Dr. Wong in Cincinnati and for the first time since his diagnosis have some answers and guidance. It is helping to have that knowledge.
Hi Perlita. This is Vee, the radiologist from Vancouver, Canada. It was great meeting you, but too bad it was on the last day of the conference in Denver. We will also be going through the process of designing an accessible home soon. So keep notes about anything helpful an we can compare notes earlier. I agree--no one should have to think about these things! You have a beatiful family.
I saw your posting re: building an accessible home. We are going through the same process, only at this point are looking to buy vs. build new. I sympathize, only because it is so frustrating!! You just don't really realize until you are in need of something very specific how elusive that thing can be. And you are right, we shouldn't have to be looking for it, or building it. I never dreamed a main-level home with an open floor plan would be so difficult to find.
I am about an 1:45 hours away from Toms River. Never been there though. We haven't met anyone near us yet that is going through this. As much information you can give your family, they really can't feel what we feel. I am pretty good at staying face, I am a veteran from the US Air Force and would like to say that my training has and will help me. This does take an emotional toll on us, but as I get focused on what needs to get done, I can push my emotions aside a little. Support definitely plays a factor on staying focused. I couldn't imagine going through this with out it. I hope that we can becom great friends and meet on of these days. God Bless,