When we first had Freddie everything seemed fine. However he was losing weight and at 10 days old we were admitted to A&E for his weight loss. Then at 3 weeks old we were told that he had a life limiting condition called Cystic Fibrosis.
We were introduced to a CF specialist hospital and team. Freddie was put straight onto antibiotics which he would have to take twice daily for the foreseeable future. He was also put on fat soluable vitamins and digestive enzymes. The enzymes help Freddie to break down the fat allowing him to put on weight. We were also shown how to give him chest physiotherapy to keep his lungs free of mucous so that bugs cannot grow and cause permanent lung damage.
Every 2 months Freddie sees his CF specialist team so that they can check his weight and chest. He always sees his consultant, CF specialist nurse, dietician and physiotherapist.
Freddie has kept reasonably well. We have had a few bumps in the road. He is under a liver specialist hospital as his liver levels are slightly raised. He also takes extra medicine to control this. Also he recently had a glucose monitoring test to check for diabetes. Cystic Fibrosis not only affects the lungs and digestive system, it can affect many other internal organs.
Freddie switched to tablets (from liquid medicines) when he was just 2 years and 10 months old. He now swallows up to 24 tablets a day.
He is a very happy, outgoing, inquisitive and determined child. He never complains and is definitely my hero.