Well, a normally 12 - 14 hour trip to KS turned into a 16-hour trip. We "thought" we had planned for everything, but when you are turning your vehicle into a moving PICU unit, it's tough to anticipate all that can go wrong. Mainly none of our converters would allow us to use the heated humidifier Braden needs to be on, so after we turned north enough into cooler weather, we had to stop every 2 hours to put HOT water in his chamber. Then the chamber cracked and wouldn't hold all the water. Of all the hundreds of extra pieces of med equipment we brought extras of, of course, the water chamber was practically the ONLY extra we did not bring. Thanks to our friend Stacey at Pulmonary Care Specialists Inc in LA, she called around 6 different places in Wichita for Nana Debby to run and get the chamber for Braden to have upon arrival. Great teamwork!
So after a very LONG trip, we've settled in at Nana and Grandpa Wilson's. Church at our home church in Wichita this morning was great - we got to see the children's program and catch up with old friends. We've gotten to spend time with new cousin Tristen and new cousin Kohen - Braden doesn't seem bothered at all by the littler babies around.
We wish you all a very Merry Christmas as we wait for the rest of the Wilson clan to make their way from Denver, and then we will be off to Ashland to see mommy's side of the family the day after Christmas for a week in the Dodge City area. Love each other, appreciate one another, and share your joys together for a bright and beautiful 2009!!
Brad, Kodi, & Braden Wilson
6 comments:
Travel Safety! Happy Trails!
Brandy
LOVE the Christmas Photos! We hope you guys have a BLAST with your family! That is what it is all about! Love you guys!
So glad you made it okay---enjoy your time with your family and have a very Merry Christmas---
xo,
the heckerts
I'm so glad ya'll are safe. We miss you here. See you when you get back. Enjoy the families. Love ya'll and have a Merry Christmas!
Much Love,
Courtney
Love you guys. Glad you are here!
Hi,
I just found your blog on google. I was googling Leigh's disease as my son had the terminal illness as well. I had been contacted by another mother who said she googled Leigh's disease and found my info, so I tried it and came across you cute sweet little boy. I then saw the Kansas and Colorado info and thought I had to post. I am from Hays, KS and now live in CO, my son passed in July, but I find myself everyday trying to find other dealing with this disease. Feel free to email me if you would like, tamiweatherby@msn.com
Though my sweet boy is gone, I cannot deal with the fact that this disease is soo un noticed and hope to find answers to this disease.
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