Archive for February, 2008
Arrived home Monday night very tired but thrilled to be back in the U.K. Lily was so excited to see me and Rohan at the airport. I couldn’t believe how much she had changed in just a month. She seemed so much older and I couldn’t believe how many new words she had. I was worried that she would be very clingly when I returned but she went to nursery on Tuesday with no problems. I was so ecstatic to leave the hospital but it was emotional as it had been my safety blanket for a month as everybody else there were in the same field. I didn’t have to justify or explain to people why Rohan was the way he was as it was just understood that he had some brain injury. I find it difficult when people ask me how old Rohan is as you can tell that they are thinking that his development is severely delayed. I find myself avoiding eye contact with people in case they question me about him. I am sure that this will get better with time as at the moment I feel that I don’t want people to feel sorry for me or maybe it’s the fact that I am still a little in denial about his condition and when I verbalize it, it seems just too real. I am really happy with the progress that Rohan made in just a month but his seizures have increased since having the stem cells. Before the therapy he was having maybe one a day at the most and now it’s between six and ten. I am not over concerned about this as the Doctor’s did warn me that this would happen and that it is in fact a good sign as it shows that the stem cells are having already some affect on the brain. They told me that his seizures will increase for around two months, get to a peak and then slowly decrease. Also, we should be able to slowly wean him off the anticonvulsant drugs which would be fantastic as they make me so drowsy which is also effecting his development. So now it’s back to reality with a very busy schedule of appointments, physiotherapy and speech therapy. It will take around 3 – 6 months for us to see what effect the stem cells will have on Rohan’s brain and if we see some improvement we will need to plan the next trip to China. The thought of going back to China for a month brings a tear to my eye but at least I will now what I am letting myself in for and have time to be more organized. One of the hardest things whilst there was the fact that they would not let me out with the baby so I was imprisoned for 4 weeks. Everybody else had their days out and had the opportunity to do some sight seeing (when the snow stopped of course) except me so at least if we return there again it will NOT be while there is a blizzard on the way. Also, it will be a very long time before I could face a chinese meal. The menu’s were something that had been designed for Hannibal Lector with dishes such as Blood pot, Fried stomach, Chickens organs, Pig’s tongue, Bullfrog and many more. The food certainly didn’t tickle my taste buds. You never knew what you were eating so I tended to stick to oreo’s, pringles and banana’s which wasn’t the healthiest diet to be on. The food on the plane seemed like a bit of heaven. I am writing this blog at 4.00 a.m. so as you can tell I am a little jet lagged. Will update it every week with news of Rohan’s progress. He is a little fighter and I am positive that he will prove the doctor’s wrong!! Thank you to everybody for helping me through this ordeal with your emails, texts and Skype’s and a huge thank you to my sister Claire in Chicago who took time out of her busy schedule every morning and night to Skype me and listen to be moan for two hours a day. She has the patience of a saint.
February 20th, 2008
Well, only 10 days to go. Can’t wait to come home. Rohan is doing very well with his daily physical therapy. Yesterday was a very emotional day for me as Rohan lifted his head right up and turned his head from side to side to look at a red toy. When we first arrived in China, Daisy the physical therapist came to assess him and she performed an exercise which assessed his reflexes. This particular exercise involved him lying face down with his arms at either side and legs straight. She rubbed her thumbs either side of his spine and there was no reaction. She said that ‘normal’ children react by pulling their legs up and their hands up to their head. Last week Rohan slowly started pulling his legs up and yesterday for the first time he pulled his legs right up and his right arm came half way up. This was HUGE. I burst into tears with emotion as this was the first real glimmer of hope for Rohan. It showed that by having intensive therapy daily things can really change. In this short space of time I am amazed at how Rohan has come on. All these little tasks one takes for granted with healthy children when in fact it is a big deal. I didn’t appreciate every little thing that Lily did and now when Rohan does anything I am ecstatic. Rohan is doing well but I feel like I am Jack Nicholson in the movie ‘The Shining’, where I am trapped in a huge house surrounded by snow and slowly going psychotic. The staff are very nice but their english is very minimal. My patience is deteriorating daily by the constant questions like ‘Kaka how many times?’ (Rohan not me), and the doctors ward round resulting in Rohan being diagnosed with sputum. The cleaners come every day with no cleaning products and run a filthy mop around the floor and damp dust with a filthy cloth. I am in the last room that they come into so I am getting everybody else’s germs spread round my room. The other day, there was an horrendous smell of sewage coming from my bathroom and when I complained about it, one of the interpreters was sent in to fix the problem with a small screw driver. I politely sent him away. The people who I have made friends have almost all gone home and those who are left don’t speak any english, so the evenings are getting very long as there are very few people to talk to. There will be a new batch of patients arriving next week so I can look forward to that. I get to speak to Lily and Girish through skype. Whoever invented this technology was a genius. It really helps me to be able to see Lily and she kisses the computer screen every time she sees me. I still feel guilty about leaving her as she must think that I have abandoned her but she seems very happy. Girish’s Mum and Dad have done a fantastic job in looking after her for me. Rohan is having stem cell No. 5 on Monday so will update then.
February 8th, 2008
Rohan had his third stem cell treatment yesterday and was as good as gold throughout. He has been sleeping really well at night which has been great for me. Now that I am over my horrendous chest infection I am now getting some much needed sleep. I am finding being here on my own quite hard sometimes as most other people are here as couple’s so it does get a bit lonely. I have met some very nice people who have been great company and a good laugh. Because of the blizzard everybody has been housed in and warned not to go out. Johnnie who is our personal assistant had to go out in the blizzard today to get me some pringles and oreo’s from the shop bless him! So we are halfway through. I can’t wait to come home. The first thing that I am going to do is get a baby sitter in and for Girish and I to go out for a nice slap up chinese meal because we haven’t had one of those for a while. I can just taste it now. In fact I can just taste it now. Looking forward to getting back to normality again and of course can’t wait to see Lily. Am missing her so much. Only 2 weeks to go.
February 2nd, 2008
