So things have been rough these last two days.. I don't know if its reality kicking in or the lack of sleep plus stress...
So we went to the genetic appt yesterday, stressed out to get there on time and to drive all the way to Emanuel again. We get there and the genetisist pretty much didn't know that the neurologist had given us the diagnosis, he said they had talked about it but that it was the neurologist who could make that determination ... that there was a medical paper written back in 2010 about the possibility of there being a gene that they think is associated with the syndrome... but that the paperand testing they were doing was in Japan ... and that he can write to them and see if they are offering testing or if they are doing just research, and if they want aidens blood sample to test, either way no matterwhat is determined there is still nothing they can do... and then he basically said that all other testing for anything else has been put to the way side because they have what they feel is a diagnoisis.... ok great... could have told me on the phone... and it wasn't something we already didn't know.... then to top it off there was a severly retarded girl in the waitingj room and all I could do is think that that is our future ..... its just so scary and angering and all everyone can say is how beautiful he is. . . And I know everyone just. Wants to be nice but it just hurts worse... then to top it off all I do when we're in public is stress about what if he has a seizure ... what if someone sees what if he does it when they're holding him....
Then to top it off today I tried to go turn in paperwork for a bill grant program we hagd been working on and the lady pretty much told me " uve had two weeks to get the stuff u needed sorry not my problem" I know she hags no clue what we have/ are going through but it just was the topper to my now constant nightmare....
Thanks for letting me vent ; o )
So we went to the genetic appt yesterday, stressed out to get there on time and to drive all the way to Emanuel again. We get there and the genetisist pretty much didn't know that the neurologist had given us the diagnosis, he said they had talked about it but that it was the neurologist who could make that determination ... that there was a medical paper written back in 2010 about the possibility of there being a gene that they think is associated with the syndrome... but that the paperand testing they were doing was in Japan ... and that he can write to them and see if they are offering testing or if they are doing just research, and if they want aidens blood sample to test, either way no matterwhat is determined there is still nothing they can do... and then he basically said that all other testing for anything else has been put to the way side because they have what they feel is a diagnoisis.... ok great... could have told me on the phone... and it wasn't something we already didn't know.... then to top it off there was a severly retarded girl in the waitingj room and all I could do is think that that is our future ..... its just so scary and angering and all everyone can say is how beautiful he is. . . And I know everyone just. Wants to be nice but it just hurts worse... then to top it off all I do when we're in public is stress about what if he has a seizure ... what if someone sees what if he does it when they're holding him....
Then to top it off today I tried to go turn in paperwork for a bill grant program we hagd been working on and the lady pretty much told me " uve had two weeks to get the stuff u needed sorry not my problem" I know she hags no clue what we have/ are going through but it just was the topper to my now constant nightmare....
Thanks for letting me vent ; o )
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