Rohan has been in and out of hospital again recently because of his uncontrolled infantile spasms/seizures. I sometimes feel like I live in hospital and have a suitcase permanently packed ready to go. Our neurologist can’t seem to get on top his fits and he is now on 5 different medicines and things are no better. The spasms/seizures are now lasting up to 25 minutes at a time and watching him go through it is heart breaking. On the positive side he is alert and quite active when he was awake and his physiotherapist was very pleased with his progress this evening. The progress is painfully slow but at least it is progress. His head control is getting stronger but in terms of his development he still seems very much like a newborn. His swallowing also seems to be improving so this makes us wonder is this the wonderful work of the stem cells or is it because he is weened off some of the drugs which were making him so sleepy that he could not feed properly? Unfortunately this is a question which we will never be able to answer as Rohan is so little we won’t know what is his normal development for him or what is the work of the stem cells. We don’t really care as long as we see some progress. I am feeling positive again that the stem cells will benefit Rohan from reading the other blogs of the other patients who we met in China. I am also busy planning Rohan’s christening which will take place before our next trip to China which will be a lovely get together for all of our family and friends before we leave.
Add comment May 16th, 2008
