Sandy Kaye

Avi had an exciting year. He became a big brother in March, started taking Trikafta in June,  and became a kindergartener in the fall! Baby Zevi loves Avi, watches his every move, and thinks everything Avi does is just hilarious. Avi is also an excellent helper. He loves teaching Zev and is also great at keeping him entertained. Quite often, Avi is the only one who can get Zevi to stop crying or to be still enough for a diaper change! 

Kindergarten has been great for Avi! He has a wonderful, engaging teacher whose child also has a g-tube. This has been a fun connection. He enjoys math, is learning to read, and comes home with lots of interesting science and social studies facts. He has a whole class of new friends who have made their way into the stories we make up and tell at home. 

Avi’s creativity and building skills amaze us. He comes up with big ideas and then figures out how to carry them out. Last spring he made an entire cardboard world, complete with all types of buildings, a farm, and a water treatment facility. In the fall, he heard that his cousin’s pet bearded dragon had died and declared that he would make her a stuffed bearded dragon to help her feel better. Everyone else forgot about this plan until one morning Avi gathered materials and got to work. With just a little help, he figured out how to do it! His current project is building Sorrow Stone Castle (from a Geronimo Stilton book) in the woods. 

Thankfully, Avi continues to be strong and healthy. We are incredibly grateful and relieved that he is finally able to take Trikafta! Avi initially had an allergic reaction to the medication, but our wonderful care team once again came to the rescue. We stopped the medication for a time and then slowly reintroduced it with an antihistamine until Avi’s body adjusted. Possibly as a result of the Trikafta, we are no longer using his g-tube, and he is maintaining a healthy weight! Avi continues to be more independent with all of his care. Respiratory treatments are a social time for us, and we enjoy reading and telling stories during these therapies twice a day. If you are visiting us, Avi will be sure to let you know which respiratory treatment you will be doing with him! 

We are incredibly grateful for the caring team at the Cystic Fibrosis Clinic in Charlottesville, who support Avi’s care.  We are overwhelmed with appreciation to all of you who have supported our Great Strides effort to fundraise for the Cystic Fibrosis Foundation. With support from donors like you, the CF Foundation supports the development of life changing therapies such as Trikafta. These treatments improve health and quality of life and extend life expectancy for those living with Cystic Fibrosis. And still, more treatments are needed. With your help, the CF Foundation will continue to support the development of new therapies to help all people with CF in addition to continuing their mission to find a cure. 

With Gratitude and Love,

Jenny and Matt

Sandy and Michael