2 weeks down
Hi everyone
Everything is going o.k. here at the moment. Rohan had his 3rd stem cell treatment via lumbar puncture on wednesday and it went well. His seizures improved that evening and night but then returned with a vengence on thursday. It is difficult not to get your hopes up when you see a sudden improvement in something but then the disappointment when things return to normal. When Rohan has less seizures, he is more alert and active which means he will have less seizures. The more seizures he has, the sleepier he is which causes an onset of seizures. It’s a very difficult battle but if we could stop the seizures then I believe that he would have a fighting chance in developing more rapidly. He is having a seizure as I am writing this blog.
The plan is to have 2 more treatments via lumbar puncture and 1 more intravenously because the stem cells travel straight to the brain when given spinally and only 60% of the stem cells make it to the brain when given intravenously so the more spinals the better.
I am finding it very hard being on my own this time round, mainly because of my pregnancy hormones which means I am missing Lily so much and feeling like I have abandoned her, and secondly, because nobody ventures out of their rooms in the evening so from 5pm onwards the time just seems to stop. I also get very little sleep with the constant nightly checks and Rohan’s seizures so I lie awake at night watching the clock. I am desperate to know when Rohan is scheduled to have his last treatment in case their is a window of opportunity to leave a couple of days earlier but the staff seem to be very secretive with this information. I probably won’t know until we get the schedule for the last week.
Rohan celebrated his 1st birthday last Saturday which was very good. It was great to meet all of the other patients and carers who were here. The company provided Rohan with a super cake in the shape of a hedgehog. Girish and I got pizza’s from PapaJohn’s and wine and beer for everybody to eat and drink. Everybody seemed to have a good time and Rohan slept through most of it. People were also very thoughtful in buying Rohan some little gifts for his birthday which was very kind.
On a positive note, things are much more confortable in terms of the bed. There is a nice comfortable mattress on the bed which is so much better than last time. There are a couple of new nurses who are very good, especially Joan who it very switched on. The doctor’s rounds are much more professional and always ask me if I have any questions and the interpreter’s are always present.
Thank you for reading the blog and remember to keep Rohan in your prayers.
Love George & Rohan xx
Add comment October 24th, 2008
