Lexi-Jean was a beautiful baby girl born on 13/01/09 at 7.52am weighing in at a healthy 7lb 5oz. We instantly fell in love with this gorgeous little lady. There were no initial signs of illness until we had her home and by 4 days old she was feeding on a 7oz bottle every hour and we were changing at least 4 nappies I between these feeds. We contacted our local hospital and were told that she was probably having a growth spurt and not to worry.
Lexi-Jean was then weighed and had lost over 1lb 4oz in 4 days but again told this was the reason she was feeding so much because of her weight loss and again not to worry!
We took her to emergency doctors but nothing was picked up, until she was 3 weeks old when a nurse from Birmingham children's hospital arrived on our doorstep. She came in and told me that my beautiful baby had a devastating life threatening disease that had no cure, cystic fibrosis, we as a family were heart broken. She started treatment immediately consisting of oral antibiotics to fight any nasty infections she may have already picked up, vitamins as her immune system is so low and her body can't retain them from her food and medication called cream which is taken whenever she eats food that contains fat or protein as well as physiotherapy on her chest to try and shift the mucus.
Lexi-Jean was diagnosed with the most severe form of CF which means that not only does the mucus build up within her lungs causing bacteria to breed and damage the lungs but also in her pancreas causing enzymes to be blocked meaning they can't be released when she eats food, therefore her body can't break down anything she eats.
She has had a complete roller coaster on her 5 years. She attends hospital appointments every 8 weeks for check ups to make sure she is gaining weight, her oxygen levels are within a good range and that her lungs are clear and no bugs are growing.
At 20 months old Lexi-Jean was extremely poorly, she had been unwell for 6 months and the different courses of antibiotics and steroids weren't working. She was so poorly she curled up into a ball on the floor and couldn't move. She was then taken into hospital, taken to theatre where they gave her a broncoscopy finding a plug of music blocked in the lower part of one of her lungs and they put a long line in for 2 weeks of iv antibiotics.
She has since had a few bouts of chest infections but they have successfully been treated with oral antibiotics and steroids.
This past 12 months have been tricky for Lexi-Jean, she has had a number of blockages in her bowel causing her extreme pain and bleeding as well as developing a infection in her nasal passage which took 4 months of treatment to get rid of it which has now left her with inflammation, rhinitis and 80% blocked airway.