Joens' Journey

                     Joens' Journey Great Strides Walk 2023

This will be our 16t h year participating in the Great Strides walk. It's hard to imagine Tarryn was just a year old when we started this. Tarryn was 7lb at her 3 month check up, which led to multiple tests and blood work where she was finally diagnosed with Cystic Fibrosis. Now it is apart of the newborn screening so thankfully Savannah's was caught right away. They have countless doctor appointments, blood draws, throat swabs and pulmonary funtion tests. Add to that the multiple medications and treatments they do everyday at home, they don't lead a "normal" life for a kid. The girls get up 40 min. earlier just to get their treatments in before school. Even though they look healthy on the outside CF continues it's attack on the inside.

Tarryn is 16 years old and in 10th grade. She's thrilled to finally be driving and enjoys dance and cross country. She is really excited for her upcoming Make a Wish trip where she will be going to Outerbanks NC. Tarryn still has CFRD (CF related diabetes) so sees an Endocrinologist along with her CF team. Thankfully she has been mangaing her diabetes without insulin. Her liver enzymes contine to get higher every year when they do a full blood panel so they are constantly monitoring that. CF not only affects the lungs and pancreas but also the liver as the mucus that builds up can cause blockage of the liver ducts. If they continue upward she will have to go on another medication to help lower those levels. She has been on Trikafta for 4 years and recently they took one of her nebulized medications away since her pulmonary function tests continue to be over 110%.   So some good things have come about since starting this medication. It's the most recent drug that helps correct the defective gene. It doesn't reverse the damage that's been done but is supposed to help with the progression of Cystic Fibrosis.

Savannah is 6 and is in 1st grade at St. Marys. She enjoys going to school, playing games, playing with her babies, putting puzzels together, playing outside and loves to read. Savannah got her wish granted and wanted to go to Disney World. The first week of February we all got to go down to Florida. It was nice to leave the cold and go somewhere warm. To say she was excited would be an understatment since she had her bags packed 4 months in advance. It was our first trip as a family flying so that meant taking 2 treatment bags and another 2 bags that had their medications and nebulizers. We stayed at Give Kids the World; and what an amazing place. It's only for wish kids and it's like a village. They had a game room, 4 different rides, mini golf, a pool, an ice cream parloar so the kids could get ice cream anytime they wanted and so much more. Every day was a different theme and luckily we got to be there when Santa came. Savannah's favorite part was the fireworks display at Disney and going to Sea World. She told us that she would remember this for the rest of her life, and we truly hope she does.

She takes about 20 pills a day, 3 nebulizers and does 2 vest treatments daily. Since October she has had a consistant cough that she just can't shake. We've done extra treatments, 5 rounds of antibiotics and a round of steroids that still didn't work. We are still working with her CF team to try and figure it out. So of course her constant cough has led to more doctor visits and missing more school. In January she got really sick and ended up with pneumonia so she was out of school for a week. We even had to turn down the pressure of her vest as she was crying in pain when she had to do her treatments. Unfortunately Cystic Fibrosis can lead to having more infections so it wasn't a complete surprise but still not something we wanted to hear.