Height: 43.38 inches!! Weight: 41.4 lbs!! For clinic visits this was a pretty fast and good visit. Little Miss had her largest growth spurt that I can recall between visits. Her culture results from last visit were normal for her, and her lungs sounded good. We added Hyper-tonic Saline to her daily routine, she has […]
Just wanted to share this cool study I read this evening, scientific advancements in gene discovery is so cool! Sequencing the genes of these five Boston Children’s patients — a cohort known as “long-term non-progressors”— the researchers found a set of rare and never-before-discovered genetic variants that might help explain their longevity and stable lung […]
I know it’s been a while since I’ve shared some new information that has been in the Drug Pipeline for CF. This first one isn’t for Little Miss Khaos (her mutation is DDF508) but it is great news for those that use Kalydeco! You can learn more about all of the drugs going through studies […]
Height – 3ft 5in Weight – 37 lbs Everything at this appointment was great. Her lungs sounded clear and they were happy with her weight gain. She had her annual blood draw and x-ray which both came back great. Since there was no new progression on her xrays from the previous year the nurse said […]
Here is a list of Cystic Fibrosis Facts that you can use in raising awareness. I will continue to add facts as I discover more, if you have any suggestions feel free to comment below and I will add it! You can see the facts below in a sharable format on our Facebook page.
Once upon a time there was an old man that lived in the desert. He didn’t have any water & he was thirsty. He zoomed to HEB & bought some. When he got home he saw a cactus & thought it was a dragon fruit. He picked it up and was poked by the cactus. […]
Last week the CF Foundation released a statements to all clinics letting everyone know their official stance on a popular mask. The Vogmask. Many were left confused and annoyed because these adorable masks have made getting the angstiest of children to wear them with ease.
Once upon a time there was a person, and it was a sunny day. The person was going to buy a swimming pool but realized he didn’t have any money. The person found the sea and decided to swim. He jumped in the water. The water shook 3 times, and then exploded with lava. The […]
I wanted to share two great reads regarding CF advancements that have happened recently.
The hardest part for us when we decided to start our Great Strides team was picking a team name. I wanted to create a list to help others come up with team names, if you have any to add to this list feel free to comment and let me know.