october updates

Savannah had a CT of her skull per the plastic surgeon's request-he didn't see any need for surgery (he was afraid her skull bones may be closing too early). The only things he mentioned was that her frontal bone was already fused which can be fused in a typical kid her age anyway. Also, the only abnormality he saw was the orbits (eye sockets). He wants us to follow up with neurology to make sure they're not seeing anything he isn't.
We met with genetics as well. They didn't tell us much more than we already knew about PKS-just gave us more of the scientific side to it. Her syndrome began at conception-the 12th chromosome-if I'm saying this correctly-rather than splitting off one chromosome into the egg and the other into the sperm the chromosomes stayed together and chose the egg or sperm and duplicated. Confusing? They reassured me that there was nothing I could have done to prevent it-just a fluke thing. 47% of Savannah's cells are affected with the syndrome, however, that doesn't determine what she will be capable of doing in life. The chromosomal error can be grouped in larger amounts than in other parts of her body. For example, a larger amount of her cells in her legs could be affected more than in her arms. So, as we've known from her 12th day of life, it is up to God and Savannah what she will do. Time will tell. For the most part, I'm okay with the card we have been dealt, I try to see it from the positive side. However, there are the days when sadness or anger creeps in my mind. It rips my heart out watching her struggle some days. Jon said the other day just saying out loud that she should be crawling around by now-but her body won't allow it at this time. I hate days when reality sinks in...