Hi everybody
We have been here over 3 weeks and Rohan has had 5 stem cell treatments. We have noticed small positive changes since being here. He is able to hold is rattles in both hands for more than 30 seconds which is a huge change as before it would be for about 4-5 seconds tops. His head control continues to improve and he is now just starting to lift his head forward as the therapist brings him from lying flat to sitting position. This is a great milestone. I also think that his vision has improved in terms of him looking directly at things when they are put in front of him. It may not last very long but previously he may not have looked or the response might have been delayed. I believe that this will continue to improve.
On the seizure front, he still has good and bad days so I don’t think that there are any improvements here yet. One day he may have 4 and another he may have 8. Again, I pray to God that this is the main improvement that we see from coming all this way. Rohan has spent 1/6 of his life in China since he was born so I hope that it has been worth it. Being away from home and Lily and Girish has been very hard this time and for all of our sakes I hope that this is the final time we will be coming here. I hope that Rohan shows significant changes when we get home and of course we will continue with all the intensive therapy he has bee getting there. Rohan has one more treatment on Monday and we hope to leave as early as thusday. 5 days ahead of schedule. Yippeee
Will continue to update this blog and thank you for reading it.
Georgina & Rohan xx
November 2nd, 2008
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
October 24th, 2008
It has been a long time since we have updated this blog but things have been up and down since my last post. Rohan’s seizures as usual have been very uncontrolled and he has had a G-tube fitted as he has had problems with swallowing liquids. Since our last visit to China, Rohan has been to India for G-therapy and Florida for vasodilation therapy. With all of the therapies he is improving slightly eventhough his seizures are so uncontrolled. He is stronger and his head controlling is improving bit by bit. His ability to see and fix and follow is also improving. So here we are in China again, and as usual we are hopefull that Rohan will see some improvement from the stem cell therapy. We have left Lily behind again which is always so hard and we are missing her already. We arrived yesterday and it does feel strange to be back to see the same nurses and doctors who looked after Rohan on our last trip. Our journey was alot more smooth this time round which made things that much easier. It’s Rohan’s first birthday on Saturday and we are sad that we are celebrating it so far from home and without our gorgeous girl but we will do our best to ensure he has a great day. He will be starting physio therapy tomorrow and will be having his first stem cell transplant on wednesday. Girish will be leaving on Sunday and I will be on my own with Rohan for three weeks. The weather is so much nicer this time so I hope there won’t be any problems with me taking him out for walks etc. When I return home I will be six months pregnant with Christmas and the upcoming birth to look forward to so I just hope that time goes quickly. I will also get to see and speak with Lily via skype once Girish returns home which will be fantastic. I will update this blog weekly and please keep Rohan in your prayers that this trip to China is successful.
October 12th, 2008
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.
May 16th, 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.
April 4th, 2008
Things have been pretty difficult for Rohan over the past few weeks. Unfortunately he was diagnosed with having infantile spasms which is also known as West’s syndrome. This essentially means that the seizures have changed to the worst type of fits which cause even more brain damage each time he has one and they are very difficult to treat. We were given the option of a drug (vigabatrin) which has the side effect of him losing his peripheral vision permanently or high dose steroids (prednisalone) which can cause his blood pressure to increase, diabetes, irritability and obesity. What a choice! Girish did his research and found that vigabatrin was the drug to be most effective in stopping infantile spasms. Even with the terrible side effect we felt that this was the right choice. Unfortunately it didn’t work and Rohan’s fits went from 6 a day to 20 a day and lasting up to 15 minutes a time. He was hospitalized again for 4 days. Because he was getting so many fits a day they were just seizing his brain and the only time he ever woke up was about 10 seconds before he would have a fit and then once it had finished he would be back to sleep again. Feeding him became impossible. This was the most distressed we had been since his diagnosis and it got to the stage where I just didn’t have the strength to be strong for him. But of course being a mother one needs to find the strength from somewhere and I did. Rohan was then put on the high dose steroids. His blood pressure did increase slightly but thankfully he didn’t have any other nasty side effects. The seizures are now down to 2 a day and only last a few minutes. This I can live with. Seeing Rohan in such distress has made me change my views. Initially when Rohan was diagnosed it was absolutely devastating to think that he may never walk or talk. Now I don’t care if my son will do any of those things as long as I don’t see him having such horrible seizures/fits. I can learn to communicate with him, I can carry him or transport him wherever he needs to go but I will never be able to stop his fits for him. It makes me feel so helpless and it breaks my heart. I just now pray that these seizures get under control. I am hoping that one day our life will be somewhat normal again. We do try to do normal things but sometimes it is difficult with so many appointments with various therapists. Lily seems to be so strong and adjusts so well to my going into hospital with Rohan so many times. She must get so tired of my suddenly not being there again but she has been fantastic. She is learning new words every day and brings us such joy. She also loves Rohan and likes to rub his head and shake his hand. I will update this blog on a regular basis and thank you all for reading it.
March 23rd, 2008
The family has been back together for almost 2 weeks and it has been nice to get back to a normal life. Lily has been besotted by mama’s return. Rohan continues to feed well although his seizures have got worse and we have had to adjust his medication. Because we were warned in China that this might happen we are less upset than otherwise. Lets hope the stem cells can help his seizures sooner rather than later. This week has been a round of hospital appointments and we have started physio. It is going to be hard waiting to see if Rohan responds and this low-grade stress is very tiring. All our family and friends have been very supportive and this helps recharge our batteries.
March 1st, 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
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