Friday, February 4, 2011
The tests came in and I never felt relief like I felt before in my life.
After the eight plus long weeks of waiting for the tests to come back. We had our next appointment. This was when Meagan was about 15-months old. They were all negative. We were so relieved. But most of all I was angry. I felt that the doctor should not have given us such bad news when he did not even have the genetic test results to suggest such a drastic diagnosis. How could he give us basically a death sentence for our daughter and act like it was no big deal. I went back to her family doctor and asked for a referral to a different doctor. I never waned to see that doctor again, I was horrified. So our daughters doctor referred us to another neurologist who ordered more genetic tests and MRI's. While we continued our regimen of pt,ot and then speech therapies weekly. For some unknown reason over the next six months my daughter started to lose all her skills and was no longer able to hold her head up like a newborn infant. That was when things really became scary. She could hardly even say mom anymore and she cried constantly. I could not even go to the bathroom without her crying nonstop. It was a very scary time. I started to believe that maybe that doctor was correct and I was once again going to lose my child. Adam and I went back to the specialist and for the next several months they ran every test known to try and figure out what was happening to our child. She went from being slightly delayed to being severely disabled in a manner of months. It was terrible. Finally after two plus long years of testing and multiple brain scans we were referred to a metabolic specialist at Children's Hospital Seattle because that was the only test that came back slightly abnormal. He was wonderful and spent a large amount of time talking with us and my in-laws about how complex the human brain is and that figuring out what is wrong is the equivalent of finding a needle in a hay field. He also said she did not have any disorders know to man at this point and that was actually a good thing because if she did it would always be something that was very bad. The only diseases they know about the human brain are bad and we did not want that no matter how troubling not knowing was for us. He said what we should do is just take our child home, love her and continue with the therapies we were already doing, unless there is another radical decline. It was the best advise we were ever given. We stopped all testing and gave her a childhood. We still had routine check ups with the neurologist, but no more blood tests or brain scans, no more sedation. We were going to do everything in our power to make her happy and feel loved no matter what. When Meagan was about three we found our current caregiver who has been such a wonderful addition to our family. I know technically she is of no relation but she is to us. She has been with our daughter since she was about three and our daughter is now twelve. Our children have grown up together and love each other. Its wonderful to have someone like that to care for your child. I know she is loved like I love her. Meagan is twelve now and has made alot of improvements, she will be wheelchair bound and has severe speech delays but I think she will only continue to get improve. I am realistic that she will never walk and be completely normal but I will continue to have high hopes no matter what is thrown at me.