I finally got a hold of someone in Chicago and they "found" her application! They actually had it in hand, so I suppose that is good news. She said she would enter it in to the compuet 'next'...not sure what that means. Next - today...next - tomorrow... next week? We'll see. From where it's at, it needs to be entered into the system and then delivered to the chief of staff (the same DR who does the casting) for approval and then we will be notified. In general, we are probably looking at at least hearing something by the middle of next week.
I spoke with another Mom tonight. Her son is in the process of being confirmed with a diagnosis of HGPPS. The stories sound so similar, with a resounding underlying frustration of basically having to self-diagnosed our kids. In hindsight, it looks as if someone should have diagnosed these kids sooner - but things are always much clearer in hindsight. I try to stay focused on the fact that at least we have the diagnosis and can move forward from here. It doesn't do much good to play the "what if" game at this point. We also are very lucky that Makenna's curve is so small. I am very thankful for that and realize that most kids do not get diagnosed until the curve is much bigger; so we have an advantage in her starting point.
I spoke with another Mom tonight. Her son is in the process of being confirmed with a diagnosis of HGPPS. The stories sound so similar, with a resounding underlying frustration of basically having to self-diagnosed our kids. In hindsight, it looks as if someone should have diagnosed these kids sooner - but things are always much clearer in hindsight. I try to stay focused on the fact that at least we have the diagnosis and can move forward from here. It doesn't do much good to play the "what if" game at this point. We also are very lucky that Makenna's curve is so small. I am very thankful for that and realize that most kids do not get diagnosed until the curve is much bigger; so we have an advantage in her starting point.