Wednesday, May 12, 2010
Caitlin is now 8 yrs old, but when she was 3 she became suddenly very ill with Pneumonia, we found she was malnourished due to her body not absorbing fat, and she had a heart block, in hospital they discovered that she had liver disease and cystic fibrosis. We nearly lost her at one point and if it wasnt for the excellent team of nhs nurses and doctors she wouldnt be here now. he had to have a nasal gastric tube in and was fed overnight for 6 months.
Cystic fibrosis affects the lungs and other major organs in the body, it clogs them with a sticky mucus and affects her pancreas so her body does not absorb fat, so she takes Creon before eating or drinking anything containing fat, pretty much everything except sweets, fruit and veg.
because of this her weight is always an issue too trying to get 2,500 calories into a child a day isnt easy.
Caitlin frequently has chest and lung infections to fight off, and often has to have iv antibiotics to try and clear them. ItS hard as she misses alot of school due to illness or hospital appointments, and she loves school.
A regular daily routine of physio twice a day, about 15 tablets and her 20 creon with her food is the norm.
Unfortunatly she has liver disease and cf itelf is progressive, and there is no cure the average age is 35.
Fortunatly caitlin is fairly well at the moment, but has been having iv antibiotics every 3 months as well as oral ones to combat frequent infections.
still as a family we remain positive and give caitlin the best that we can and try to treat her as a normal child of her age.