Hey All, I just wanted to write a post to everyone who was involved with Stephanie and Adams quilts. They arrived today and they are both over the moon with them.
I can't even explain how beautiful they are, you've all done such an amazing job ❤️❤️
Thank you all so so much ❤️❤️❤️
Stephanie was born in 2017. She was diagnosed at 10 days old with cystic fibrosis.
CF is a condition where the mucus in the body is dehydrated making it a lot thicker and stickier than it should be. This means that Stephanie does a lot of different kinds things to try and stay healthy.
She does breathing treatments in the morning when she wakes up and before she goes to sleep at night. If she is poorly she also does a breathing treatment in the afternoon and/or throughout the night.
Having CF means a lot of other parts of her body don’t work the way they should, her pancreas is clogged with mucus meaning the enzymes cannot be released, leading to Stephanie taking digestive enzymes every time she eats or drinks, day or night. There is no set dosage so the more she eats the more tablets she takes. She takes a medication called Creon and has been taking full capsules since she was 8 months old. She’s now 1 and a half and can take 4 capsules in one go.
This girl never ceases to amaze!
We spend a lot of our time in and around hospital and have a really great team behind us!
We spend a lot of time on different antibiotics to keep her well.
We have to avoid certain things like people with coughs and colds, stagnant water, mud & dirt and other people who have CF due to risk of cross- contamination.
There is one exception - her brother. Other than her brother Stephanie cannot meet another individual with CF. It is a very isolating condition, If she ever chooses to pursue a friend who understands her then it has to be done virtually, they can never meet.
Stephanie will always have CF but CF will not have her.