Dazed and Confused

Savannah had her appointment with the neurologist today. I'm not sure where to begin. It seems like we have a little more information, but more questions I think. The doctor did an exam to check her reflexes and to "see what she can do." We saw the images from the last MRI that was done in February. He showed us the areas of extra fluid. There were no signs of stroke or damage in specific areas. Her entire brain is just smaller than it should be.

After examining her, he seemed perplexed. He told us that with the global cerebral atrophy, the entire brain is affected. There would not be just one area (like her speech) that would have problems. If the brain damage was the cause of the loss of speech, that she should also have cerebral palsy which she obviously doesn't since she has low muscle tone. This would be the one piece of good news we received today.

He said that even though she had speech before the injury, it is possible that she would have lost her speech anyway. Apparently, some children with autism start out able to speak and lose their words. He also noticed that Savannah is showing some other signs of autism - lack of typical social interaction and the flailing she does with her arms and legs. Although he did not diagnose her with autism, it is possible she has it. Children with CHARGE Syndrome are more likely to develop some form of autism or behavioral disorders like OCD, ADHD, etc. We won't know for sure until we can have her tested.

He informed us that most children who are not verbal by the time they are 4 years old are not likely to develop normal speech. Also, if they are not walking by the time they are 6 years old they are not likely to learn. Obviously, nothing is for sure as every child is different. Savannah has never adhered to the "norm" for ANYTHING! He even told us he doesn't know and there is no way to know what will or won't happen.

There was another MRI done back in 2007 when they were looking at her ear canal structure. The doctor is going to get them to restore those images so he can compare all 3 MRIs and see if he can get more information. He said he would let us know something by the end of the week. He is also going to consult with the Physical Medicine and Rehab doctor to see if they can offer us anything else.

Another thing to consider that Jon and I talked about on the way home...Savannah could have already had this brain damage before the cardiac arrest in 2008. At the end of 2007, she was having a lot of trouble with respiratory distress. Her oxygen levels would go down when she slept and she had several hospital stays. We suspect that was the beginning of her damage and the cardiac arrest just "sealed the deal." That is just our parent speculation.

Basically, there is no surgery or medication to help her. She should continue all her therapies and hope and pray that they work. It is what it is and we just have to deal with it. It is not easy to think about the road ahead. We just have to take it day by day like we've always done and depend on God to take care of us and her. I am thankful that she is still here with us. She can always bring a smile to my face. I am also grateful that the one word she does have is "mama."

Please continue to pray for our baby girl. We love her so much and we just want the best for her. I just want her to always know she is loved no matter what.