Keagan

Keagan and her twin brother Brayden were born 4 weeks early, and he was in the NICU for 2 weeks before we brought home.  They sent us to the Rehabilitation Department at Wesley Medical Center for his NICU check up to make sure he was on schedule for his age and adjusted age, and they decided to look at Keagan to make sure she was also.  Well he was fine, but she was developmentally delayed.  They set up an appointment with the Early Intervention Program (which is WONDERFUL by the way).  We have a service coordinator that come once a week and a physical therapist that also comes once a week.  Without this I would have found a way to help my child, but they have been a true blessing. 
As a mother you just know when things are not right with your child, and it started early with her.  The first 2 weeks we were at the doctor at least everyday because she would not eat or gain weight.  After a few months I told the doctor something was not right, and I guess he thought what everyone else thought, just because she was small I was being over protective.  The light bulb finally went off and he decided to do something. 
We have been to a neurologist, geneticist, and cardiologist.  She is now 15 months old and we still have no answers. EKG, EEG, Echo cardiogram (4), chromosome testing (all normal), and a variety of genetic tests.  She was tested for maroteaux-lamy syndrome which came back above average , but in a normal range.  I still don't understand how that happens.
She has had episodes where she has turned pale, no color whatsoever, and goes limp. They couldn't figure out why. And now her hands, feet, mouth, and nose turn white to blue to purple then back again.  Still no explanation for that except it could possibly be Raynauds Disease. 
She has a heart murmur (PFO now an ASD).  Three echo cardiograms have been done to keep a check on it and we were referred to a Pediatric Cardiologist.  The appointment was this past Friday.  Up until then everyone has said her heart was fine and they would just watch it to make sure it hasn't changed any, and she could live a normal life with it.  The doctor we seen said something completely different than that. He told us that her murmur did not sound like a small thing and decided to do another echo.  He measured her murmur and said it was bigger than any of the reports had said, he found the right side was bigger, and that she had fluid.  He is in the process of making us an appointment with a surgeon, because he says it needs to be fixed with an umbrella.  Not something I wanted to hear, but I can accept it if it needs to be done.
The thing I don't understand why none of the past echos have not brought up any of these issues.  It is just frustrating that it took this long for these issues to be addressed by someone, especially when she has had three previous echos and they all said it was a normal heart.
The only person who is a true advocate for your child is their parent because if we don't speak up for them no one will.
Sorry for going everywhere with this post and venting a little, but I just wrote it as it came.