NiQi - Home From Hospital

NiQi was in hospital for just over two weeks again this month and we missed her so much whilst she was gone....more so than usual.  There have been so many great milestones in her life the past two years for which we are ever grateful and I think that now we kind of expect more improvement each time she goes in for IV treatment...as well as all the times in between.

There are moments when we want to believe that because she is doing so well by comparison that she will be able to go for years and years, continuing to do well.  Then reality sinks in and we know that isn't the case.
Knowing that each time she goes to hospital, she has to start with a three day course of  Ranatidine, Cortisone and Texa to de-sensitize her system before she starts with her antibiotics is just the beginning.
Knowing that this is the only way the antibiotics will be effective, is a reminder to us of how the disease has progressed.
Knowing that it takes more than a week of being on IV's for her to start feeling any kind of effect and Knowing that even having these antibiotics doesn't stop her picking something up while she is in hospital before she has finished the course, is all to be expected.

On the other hand, years of taking medication has is benefits too...Having a sonar on her liver this time gave a 'Westaby' score of 3 which is considered normal.  This is good news and shows that her liver has healed...it is now smooth with no cirrhosis.  This means that she is able to stop the medication she has been taking...three tablets less to take, two times a day.

NiQi is so blessed that her cystic fibrosis seems to have reached a plateau and is presently stable.  There are many in her position that continue to spiral downwards and lose their battle quicker than they should.  Maybe it is because her attitude is good, her determination to survive is high and she tries her best to look after herself....we will never know.  What we do know is NiQi is stronger than most her age, she has been through more in her life than many can even dream or imagine and she has more to think about and fight for than her peers.  Whatever it is, we know that all the above is part of God's plan for her life.

For now, she is home and looking forward to our holiday in a few weeks time and we are happy to have her amongst us again...not only that but I can exploit her for child labour and have her help me with my chores...lol