Daddy left on Sunday so I am here on my lonesome looking after gorgeous bub. Rohan had his second stem cell therapy on Monday and all went well. He will be having his third on Friday which means he will be halfway through. He seems very content with no adverse reactions thank goodness. He is having daily physical therapy which is already improving his muscular function. He is beginning to hold his head up for longer and starting to move his head from side to side. He is also starting to smile more which tugs my heart strings. I am starting to see slight improvements already such as Rohan’s ability to now swallow his saliva rather than gag which makes his feeding much easier. Am missing home very much especially as I saw and spoke to our little girl Lily today on Skype for the first time since our arrival. Thank you to everybody for your comments and support. Will keep you all posted as to how we are doing.
January 30th, 2008
The good news is that Rohan is sailing safely through his treatments- 3rd one due on Friday. I really feel that all your good wishes by comment,txt and email have created a protective bubble around him. Meanwhile all around him we are falling like flies. Dad is back in Uk and mum is still out here but both with bad chests- seems to afflict most of the parents here. Spending time with some of the very motivated parents here has definitely helped us. When our settled 2+2kids world was shattered it was replaced by a world of real fear and uncertainty. There are parents here who have survived in this new world a lot longer than us and it gives us hope and also ideas for other things that may improve Rohan’s quality of life. Infact enough ideas to keep us busy for the forseeable future which is a good thing because we have to keep pushing forward- not only to give us hope but also the feeling that we have some control over us and our sons destiny.
January 30th, 2008
Well Rohan had the first stem cell infusion yesterday afternoon. Mummy and daddy did not get a wink of sleep last night fretting over every little cough and gurgle, but our little emperor( well he is one-millionth chinese now) did not turn a hair. let us hope that the rest of the treatments run as smoothly. Being up all night we probably had too much time to think about everything that has happened over the last month. It still feels as if our baby son is a long way from us, but it is only through God’s mercy that he may begin to move slowly and bit by bit towards the outstretched arms of his desperate parents.
January 26th, 2008
Last night Kirshner had organised a pizza party. It was great just to talk to the other parents here and exchange stories. We are all taking a leap of faith and it is reassuring to know we are not alone. The weather is freezing here so cannot venture out for too long. Rohan has his first(of six) iv SCT today and we have been warned that he may get temporarily worse re: seizures etc. Anyway we are committed to this course of action and have had no doubts, so here goes….
January 25th, 2008
Jan 23 Well we made it here to Hangzhou after a long and stressful flight. Rohan is having bloods done today and we hope to start SCT in a couple of days. He is 3 months old and was diagnosed with polymicrogyria and CPBS after fitting at age 2months. The staff here are friendly and helpful and the hospital room is very comfortable. We are hopeful but understandably apprehensive about the next few days. We are also missing our 21mth old daughter Lily who is at home with grandparents.
January 23rd, 2008
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January 14th, 2008
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