Workup: Days 2 & 3

Rylie continues to make us proud with her courage and strength. She shocked the socks off of the neuro-psychologists (and us too), and showed off for the BMT team on Tuesday afternoon. She passed her hearing test! But the ENT doctor said her ear tubes have fallen out (they were put in September of this year)! We were surprised, but our ENT in Denver said that would be a possibility. They usually stay in for over a year though. It is great that she passed her hearing test even without the tubes! The doctor said that he would want Rylie to get new tubes if she is to have the BMT to reduce the chance of infection. They could easily do that procedure with other tests that she would need to be sedated for.

Tuesday night a sleep specialist hand-delivered a sleep apnea machine to our room at the Ronald McDonald House. She showed us how to hook it up to Rylie. There were two sensors on her chest to measure movement, one on her toe to measure oxygen levels, and a very annoying strip below her nose. We were instructed to wake up every two hours to make sure the sensors were in place. Lyle kept watch--lucky me--and by 3:30 the strip under Rylie's nose strip was not properly attached. He fixed it (without waking her) and went back to bed. When he got up at 5:30 it was not in place again. We have not heard back about Rylie's test and if they got enough data. We're praying that we don't have to go through that test again! The reason for the test is that if there are obstructions with breathing, the specialists want to take care of it before a BMT. Also, if she has sleep apnea, she is at higher risk for complications during the procedure.


We had two appointments before our 2:30 flight back to Denver on Wednesday. Cory, Lyle's cousin, picked us up at the airport and had made us a delicious dinner. We were relieved to be home, and Rylie has been sleeping like a champ in her own bed (without being attached to wires!).








Lyle's parents are traveling to Denver today, and they'll head back on Sunday with the dogs. In Salina they will meet my family for a dog drop-off. Aggie will be staying with my aunt Janie and Kona will be staying with my parents in Kansas City until things settled down for us.