When Shannon was born it became quite apparent that something wasnt right.
She would sleep all day long and would have to be woken up for feeds, despite drinking 6 oz from birth she lost a considerable amount of weight and would vomit after every feed and by 4 weeks old she was diagnosed with Cystic Fibrosis.
She was admitted into hospital for intensive treatment for 2 weeks where we could learn all the medication and the physio routines. At this point our world fell apart and all the grim stories of the life expectancy being only 15 years was hard but we have reached that now so heres to the next 15 years.
Shannon had an operation to fit a portacath at 6 months old due to everytime they tried to canulate her vains would tissue and not last very long.
At about 2 years old she developed breathing problems and was diagnosed with a pseudomonus infection which meant another 2 week stay in hospital for introvenus antibitics as well as nubulised antibiotics and more physio this continued for another 6 months until the infection had cleared.
She then had a good few years of staying quite healthy until boxing day of 2011 when she went into ketoacidosis and ended up in the high dependency unit very ill.
This was when they diagnosed Cystic Fibrosis related diabetes and was on injections of insulin 4 times a day which was hard as Shannon was so needle phobic, she was unable to inject herself.
Shannons dad passed away suddenly in 2012 which hit her hard and had major effects on her health.
She was back and fore into hospital during 2011, 2012 and 2013 with many different chest infections and the diabetes was out of control and very difficult to get a grip on her weight dropped to an alarming all time low where they considered a peg feed.
Her CF nurse said we should try an insulin pump which could help with the diabetes, so off we went back into hospital for another 2 weeks for her to get used to it and changing the cannulas every 2 days instead of all the injections shes never looked back and her weight is now coming back up to a healthy amount.
Her days consist of physio routines twice a day if well more if needed, taking around 30 tablets a day, 2 different nubulisers, insulin through the pump and as much exercise as her body can tolorate. She has good days and bad days where she could be in bed the whole day after a hypo as her body has to work twice as hard as any normal persons, we try not to leave her in bed too long as this is no good for the secretions in her lungs as we dont want them nasty bugs to get in and do some damage.
Shannon has had many friends with Cystic Fibrosis through social media (as they cant meet in person due to cross infection) who have passed away very young but through everything she had had to go through in such a short life she always has a smile on her face.