We have a surgery date! 
Kylie will have surgery to place her port in her chest on January 24.
We will be traveling to Texas for her 3 month bronchoscopy February 1, and get some answers on the rejection side of things.
Hopefully all goes well and we are home before her “first” Valentines Day 
I dread the drive to Texas with two little ones, it takes about 26 hours. 
If anyone has tips on traveling that far with two toddlers and how to entertain them then I would greatly appreciate it. Last time was not a fun experience (10/10 do NOT recommend).
The next time we go to Texas (in April/May) Kylie will be evaluated for her airway reconstruction surgery.
Kylie has taken about 10 years off my life today. She pulled her trach out, twice! No matter how tight I make her trach ties she figures out how to pull it out. So I will never sleep again. 
So, Virginia has been STRUGGLING with this snow “storm”. First, no electricity and now our area has been without water for days. Pray that Virginia can get the issues fixed before our next snowfall this weekend. 
We love you all.
Stay safe and warm 
