It has been a whirlwind for us the past few days. We were in Indianapolis yesterday to see the genetic & neurodevelopment specialist. They did an extensive evaluation of her development and also took eight vials of blood. They are testing for every “syndrome” and “disorder” that leads to developmental delay. The doctor believes it to be Rett Syndrome which is a devastating diagnosis for us as a family. This is a neurodevelopment disorder that hinders brain development and affects major skills such as speech and gross motor. “IF” this is the ultimate diagnosis the ability range can vary dramatically from girl to girl. We had an EEG done on Friday to determine if she is having seizers (a common problem with Rett Syndrome.) We are also scheduled to have another MRI on Monday, May 7th to compare with the MRI performed back in October.
All of your prayers, love, & support are GREATLY appreciated. We will not have the official results (diagnosis) for another three to four weeks. As you can imagine the waiting is tough. Brooklyn has been a trooper through all the testing; she is our brave little girl! Through it all she still has that smile that can melt any heart!
Friday, April 27, 2007
Posted by Brooklyn at 8:00 PM
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