Monday, May 5, 2014

Denver Day 13 of Treatment

Today is the day we went home from Denver. It was our 14th day in Denver, but 13th day of treatment. So many good things have come from this trip. We are so thankful to everyone who made our journey possible. We could not have done it without those who helped us to raise money and those that donated. Our Sunday School (life change group) has truly helped us "change our lives". I love each and everyone of our classmates like family and our entire church and friends and family all over the country have gone above and beyond...thanks to each one of you!
We woke up at the crack of dawn on Saturday morning and finished the packing and cleaning of our room at the Ronald McDonald House. We grabbed a quick breakfast from a drive thru (haven't done that in years!!) and headed straight to the hospital. We did our last soak and wet wrap and finished up all of our wet laundry. We said our goodbyes to the wonderful nurses and staff. They have been wonderful these last two weeks.
 Immediately after he was out of his wrap, we headed for the Denver airport to wait for our first flight. We got there two hours early and made the flight with no problems. By this point, I was already tired from cleaning our room, packing, checking out, bath, and wet wrap. I don't think I was prepared for a 3 hour flight, a 2 hour lay-over, and another flight after that. It was a looong day!
We made it in to PCB around 8:00pm and Chris was waiting for us outside. Bailey sure was happy to see his daddy. I think Chris was amazed at how good he looked and felt. So far he has not had a flare since returning home. We are working on making sure everything in the house is allergy-proof (most already was) and working on getting in a routine here at home like we were at the hospital. It is very important to train him in a routine. We have tons of medicines to get filled so that we have everything we need at a moments notice for a flare, or if it is time to "step down" on some of his meds. We are also working to get him seen this week by his local Dr. and the Dr. in Orlando. We have to meet with them to go over his treatment plan and catch them up on his success so they will know how to treat if we call or go in for a visit. Denver is wanting him to come back for a follow up visit at some point so they can document his progress as well. I told them not to hold their breath. We may do a virtual visit over the computer. Flights and arrangements are just too expensive. We will definitely stay in touch as much as possible though. They did give us 24 hour phone numbers and contact info for all of the Drs. I hope to put up some new pics in the next couple of days. He is feeling so good. He has wore shorts and short sleeves the last couple of days, which is a huge step for him. We are pleased with everything that has happened these last couple of weeks and continue to see amazing progress daily!

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