Thursday, June 19, 2014

Monster feet!

Thank you, Mattoxes, for making our day...even though we know the presents were really meant for Otis! We love you guys. (Excuse the mess!)
















Had to throw this one in to show that it's not ALL play here!



Wednesday, June 18, 2014

KPR/Kansas Health Institute Story

Back in April before we made the move to CO, we were interviewed by Jim McLean of the Kansas Health Institute News Service. Jim came out to Baldwin to interview us at David and Donna's house, where we had set up camp as we were trying to sell our house in Lawrence. We were just told by our friend Josh that he heard the story air on KPR this morning. It includes clips and info from that original interview, and some pieces from a follow-up conversation Ryan had with Jim by phone after we arrived in Colorado and got Otis started on Charlotte's Web. We're pleased with how the story turned out, but I do have one correction: families are flocking to the Colorado Springs area. Manitou, where we live right now, is a tiny town to the west of the Springs. I think there are a couple other Realm of Caring families like us who live in Manitou, but most people are moving to Colorado Springs proper or really nearby.

Click here to listen to Jim's story.


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After a few terrible nights of not much sleep and way too many seizures, Otis set a new record for himself last night:  9 hours of sleep in a row. I know better by now than to expect it, but I am certainly keeping my fingers crossed that he'll be able to get back into his improved sleep pattern again this week. Seriously, who sleeps for 9 hours?! (Otis Flynn, apparently...that's who!)





Monday, June 16, 2014

Weekend

We had such a nice birthday/Father's Day weekend. Father's Day especially was one of those days where time seemed to go really slowly and we were able to just really sit back and enjoy the time together. One of the other Realm of Caring families held a birthday party for their sons up at a really lovely park north of the Springs, so we got to spend a super fun day in the company of new friends. The weather was gorgeous--clear, warm, and sunny all day long. It actually felt like summer!

Although Otis's sleep has improved, he is still having many many seizures each day. We are trying to go very slowly with med changes so as not to cause to much disruption to his little system, but sometimes it is so difficult to be patient, especially when the seizures just keep coming. Please remember us in your prayers--continued healing for Otis, and strength and patience for his parents.


Photobombed by Daddy!



Reading the card that Cousin Taisley made for him



Father's Day biscuits and gravy (I swear the biscuits aren't burnt--they're whole wheat!)

Wrapping up a very happy Father's Day