Poppy E's quilt (Quilt Coming Soon)
|Illness:|| Cystic Fibrosis
Theme: Flowers, Butterflies and Rainbows
Quilt will open soon, keep checking back!
Flowers, Butterflies and Rainbows - A poppy on the label only please.
"She is very grown up so nothing too childish"
Poppy loves to spend time with her family and friends. She is in to pop songs, make up and clothes. She doesn’t have a particular favourite colour but likes pastel hues.
She is very grown up so nothing too childish
Poppy was our 2nd child but 1st daughter. My pregnancy was straightforward and Poppy arrived very quickly on her due date weighing 7lbs.
At 3 weeks old the results of the heel prick test revealed the cystic fibrosis diagnosis and we were sent to the children’s hospital an hour away for further tests and to meet the team who would now care for her. She was on antibiotics for the first 2 years of her life and at 6 weeks old we found out she was pancreatic insufficient meaning more medication every time she ate.
Poppy continued to meet all her normal milestones and the cystic fibrosis was well maintained.
However at the age of 5 it became apparent that Poppy would need a little more attention every 3 months. This was a hospital stay for 2 weeks for IV antibiotics, increased physiotherapy and to help increase her weight. We did this routine for the next 2 years at our local general hospital before she started to decline a lot quicker and her lungs were severely damaged. She suffered from pneumonia and ended up at the children’s hospital for 2 months, spending time in PICU and HDU. Unfortunately having got through that our hospital stays were more frequents and in 2020 we had 10 admissions of 2-3 week stays each meaning a lot of school was missed and time together as a family of now 5 was limited. Poppy has been fitted with a port and has a gastrostomy tube which has allowed her to put on the much needed weight to help her to stay healthy.
In December 2020 4 days before Christmas Poppy was started on the new “miracle drug” Kaftrio and for the last 6 months has exceeded everyones expectations with only 1 hospital admission this year which was reduced due to how well she was.
Poppy is a very mature child who has a great attitude towards her diagnosis and has never let it stop her from what she wants to achieve. She is a very determined young lady.