On Monday we knew our life had become drastically different than we had ever imagined it would be. Today blew Monday completely out of the water. I feel strangely detached at the moment, like all of this is happening to someone else's daughter...like shock a little I guess. And I'm exhausted. I'm sure that I will certainly elaborate on the appointment and my thoughts and feeling etc. later on, but for right now I just want to relay the two main and most heartbreaking things we learned today from dear, kind Dr. Coffman. As we were beginning he said that some women with Rett syndrome have lived into their 40s. When I asked how long they generally live, he said twenties or thirties. No website said anything about this and he said because the websites shouldn't. As Lucy ages, she will continue to lose functioning throughout her body. The gene mutation causes the brain to deteriorate which causes health problems such as trouble breathing because the body is no longer able to function. The complete deterioration will hopefully take a long time, but he said she will eventually not be able to walk, if she is ever able to, talk,use her hands,etc. and once she loses the functioning of something, she will never regain it.
So, it seems like we have her for a limited time...we didn't know that before. I don't really know what else to say at this point.