August of 2017 Mike and I received a call from our foster agency about a little girl who was needing a home.  We specialized in medical placements; however, we had not yet had a child with Cystic fibrosis.   I met with her team and was so so scared.  Would I be able to keep up with her care? Was this to much? I've never done these meds or treatments before.  What if I mess this up?

Then i met her.  Three months old blonde hair little itty bitty thing attached to a wedge pillow bc of the projectile vomiting.  She just grinned from ear to ear.  I knew we had to do everything in our power to help her.  

The first nine months we had her we were inpatient every single month.  I felt defeated.  What was i doing wrong? Why was she always so sick?  She has THE best team tho that never let me give up.  

Two years ago we were sent to Boston Children's for surgery for Tracheomalaysia.  I literally watched her die right in front of me.  I watched the ICU team assemble and methodically go thru their process to reintubate her and bring her back to us.  Scariest time of my life.  Watching her fail coming off the vent multiple times not knowing what her future would hold.

Thru research Lydia is now on a CF modulator.  What a difference it has made!!  She still needs all her daily treatments via nebulizer and her vest but she has managed to stay out of the hospital for a little over a year now.  Longest stretch ever!!  

Lydia not only has Cystic Fibrosis but she has Pancreatic Insufficieny, CF liver disease (along with another horrible liver disease).  We were blessed to adopt her when she was 2.  She completes our family.  Her sass is strong but our love for her is stronger.  

Please help if you can to help us keep people like out little Lyds around for a long time. ♥️