Trip Totals: 1212 miles. 6 gas stops. Lots of songs, stories, games. And the only Starbucks between Brighton, Colorado and York, Nebraska is in North Platte, Nebraska.
Torie was a great source of inspiration to Mom and I on our voyage. If a 2-year-old isn't complaining and whining about being in the car seat for 20 hours, it's hard to do it yourself. She handled the drive like she does most things - smiling and laughing and sweet as can be. She would get out at pit stops and say "No. Not." when getting back in the car seat. But when we told her we had to keep driving she'd just say, "Yep. Minnesota." It was snowing when we left Council Bluffs Sunday morning but it stopped about 20 miles out of town and we had sunny blue skies and dry roads all the way here. Ronald McDonald House (RMH) had a room available for us and as soon as we walked in, Mom and I both cried. Maybe we were just relieved to be out of the car. I think it's more the energy here. As soon as you walk in the door you can sense the warmth and caring here. We are in House 1 on the 3rd floor with a really cool loft. We are on the waiting list to move to House 4 - more apartment-like for us "long-termers".
Today we started Pre-transplant work-up with lab work, EKG, Echocardiogram, line consultation, and meetings with Dr. Smith from BMT clinic and Dr. Braunlin from cardiology. She said Torie's Echo looks great..A+. Hooray! That has been weighing on me. After her line infections and being so sick, there's a chance that it could've settled on her heart valves. No Endocarditis for our Super Trooper!
Funny story of the day: Last night after her bath, Torie laid in her bed and we were sure she was just gonna crash. Mom and I were tiptoe-ing around, putting stuff away, and I looked over at Torie's crib. She was standing up watching us. As soon as I looked at her she starting singing "dance cares away, worry 'nother day, down Fraggle Rock."
So adorable!!
ReplyDeleteThere is another MPS I family in town for the rest of the week I think staying at Radisson right now - Alli is 7-8 and on ERT but also has Hurler form and having c-spine surgery tues. Perhaps your families will meet up.
Do take care - keep up the great work Torie!
Erica
www.caringbridge.org/wi/ericathiel