EEG NORMAL for that period in time....good news....improved over last year. SHE IS NOT HAVING SEIZURES! !!!!!!!!!!! She is having some neurological wierdness that is not uncommon with kids with the many issues like Liz. Dr Siegler will be referring us on to a Geneticist in Oklahoma City which could be a 6 month or more wait but needed. And giving us information on Cook hospital in Ft Worth. And a possible contact in Houston. These hospitals do studies and see kids with Rhett Syndrome. ......which while at this time we cannot say Yes this is what she has.....we also cannot say No she does not have this ( it is still under the autism spectrum). He feels like we ABSOLUTELY HAVE to continue doing what we are doing. While there are still questions to be answered and places to still go......my baby is not having seizures and for that I can be glad and thankful and oh so relieved. For all your support, and prayers, thoughts and kind words... ...thank you, so very much. Because without all of you, what we do and where we go would be so much harder. You bless us, you love us and feel our need....and do for us what we need when we need it.....love us and support us and hurt right along with us. Never doubt the love and prayers are known and appreciated more than there are words to say. We love each of you........and are in our hearts.
Posted on: Thu, 18 Dec 2014 21:18:45 +0000
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