Rohan’s Congenital Bilateral Perisylvian Syndrome Blog

Things get a little better

April 4th, 2008

Rohan has thankfully improved over the last couple of weeks.  He is still having a couple of seizures a day but that is to be expected.  He is spending more time awake as he is weened off a few of the drugs so it enables him to be stimulated more and he gets more out of his physio sessions.  He is starting to bring his hands to his mouth and turn his head from side to side to look at things.  He is just this week now looking at faces.  He now looks at me when I feed him which I thought this was something he would never do.   The next thing I really want to see is to get some emotional response from him when he looks at me.  It would make me so happy if he smiled.  I am sure it will come one day, I just need to be patient.  His swallowing has been problematic and we are concerned that he may be aspirating some of his food slightly.  We are hoping that once he is weened off more of the drugs he will be more awake and strong enough to feed properly.  We are aware that one of the areas in his brain which is damaged controls his swallowing so unfortunately this is something which may be permanently affected.  Rohan has also met the criteria for some respite at a wonderful new children’s respite centre which will give me a little break from time to time to gather my thoughts and to concentrate on Lily for a while.  He will be cared for by paediatric nurses and there is a doctor on call 24 hours a day so at least we know he will be in good hands.  We spent our first night there last night to check the place out and Lily was in heaven.  She thought all her christmases had come at once with the amount of toys that were there and it also has a swimming pool.  It is wonderfully set up and we can spend time there as a family or just drop Rohan off there if we want to get away somewhere for a day or two.  I am feeling more positive again which is good as I found things to be very difficult when his seizures increased.  Girish and I are busy trying to plan our next trip to China which will probably be in September so we can be home for Rohan’s first birthday.  We have yet to see any signs of improvement from his last stem cell therapy but here’s hoping the next trip will be successful. 

Entry Filed under: congenital bilateral perisylvian syndrome,Uncategorized