Rohan’s Congenital Bilateral Perisylvian Syndrome Blog

forward momentum

January 30th, 2008

The good news is that Rohan is sailing safely through his treatments- 3rd one due on Friday. I really feel that all your good wishes by comment,txt and email have created a protective bubble around him. Meanwhile all around him we are falling like flies. Dad is back in Uk and mum is still out here but both with bad chests- seems to afflict most of the parents here. Spending time with some of the very motivated parents here has definitely helped us. When our settled 2+2kids world was shattered it was replaced by a world of real fear and uncertainty.  There are parents here who have survived in this new world a lot longer than us and it gives us hope and also ideas for other things that may improve Rohan’s quality of life. Infact enough ideas to keep us busy for the forseeable future which is a good thing because we have to keep pushing forward- not only to give us hope but also the feeling that we have some control over us and our sons destiny.

Entry Filed under: congenital bilateral perisylvian syndrome,Uncategorized