Neilcharm's Comment

Neilcharm, I hope you don't mind if I copy and paste your comment onto the blog? I just think that it is amazing what your daughter is doing not only to better herself, but to better ALL CFers! I know not too many people read all the comments, and I think that every CF mom would want to hear this, so they can pray for your daughter and for you, as I know it must be very hard on you as well.

Hi I just want to tell you that I read your blog every single day. I may not always comment but I adore the pictures of Lil Chris and the comments Aunt D and yourself give. About the programme, my daughter tells me at the moment she has had MRI, CT scans, bloods, exercise programmes, physio (which is no longer percussion but breathing from the diaphragm, coughing up the sputum and is on DNASE which is a very expensive drug - in South Africa only the very rich can afford this medication whereas in London she gets this meds on the NHS because she attends the CF clinic at the Royal Bromton Hospital (we jokingly call it the Royal Brompton Hotel). She does all her IV treatments at home and at work - the company she works for have a medical room which she has permission to use at any stage. This programme is a 3 year stint, whereby they measure, scan, bloods, sputum, diary, etc....and she has to go to different hospitals in Britain, mainly in the London CBD area for different sections of the programme. When she becomes ill with infection, the programme gets halted until she is better and then they carry on because the results can differ quite a bit with the antibiotics. Thats all I know for the time being but that she is doing so much better there than here in SA. I do miss her terribly but she is a determined little miss (shouldnt call her that - she's 27yrs old) and has goals set in her life that she is determined to achieve no matter how long it takes. Whenever I do get info from her regarding the progress of the programme I will be sure to let you know. Promise. Afterall, this programme is for the benefit of all CF'ers. So Hold thumbs. God Bless you and your whole family and I hope this is a little bit of hope for you. Till next time....please keep us updated about Lil Chris.....brings back sooooooo many memories when C was growing up......hugs xx x x x x x

I'm so glad to hear from you again! I was hoping you still checked in with us. It is great to hear you check in daily and that it brings back many memories for you. Please feel free to give any advice at any time, Lord knows I need it: )
Hope to hear from you again soon,
M