We received our first positive culture for Pseudomonas, it felt surreal having dreaded that culture for 5 years now. Part of me feels like I should go cleaning crazy around our house and replace everything, but I know logically that it is every where and it was only a matter of time.You can read more […]
I wanted to write a post, of products that have made our life easier day to day. If you have any products that you love, post them in the comments and I’ll add them to this post! Having a child with Cystic Fibrosis is very time consuming through treatments and enzymes, any products that can help make things faster/easier are awesome! I am going to make a list, then go into them more below if you want to read the why.
Written By: Mary Gabriel, her daughter Allissa has the Cystic Fibrosis mutation DDF508, and her Facebook Page is Allissa’s Fight ———————————————— This is Elly. She is an elephant. Allissa’s elephant to be exact. Elly wears twelve years of love & tears. She is a symbol of where we have been & what we have survived… […]
I want to compile a list of great resources to about Cystic Fibrosis for a young Adult audience. If you know of any others please let us know in the comments and I will update this list.
I want to compile a list of great resources to help explain Cystic Fibrosis to children. These would all be great for your children, or to take to school for classmates. If you know of any others please let us know in the comments and I will update this list.
We live in Texas, so it’s the high 90’s and low 100’s all summer. I have mentioned before that our daughter has Cystic Fibrosis and a big part of this disease is hydration. Due to the inter-workings of the mutated genes of CF she sweats and loses salt faster than someone without CF. This means […]