Tuesday, September 2, 2014


Otis had a great first day of school this morning! He had fun meeting and playing with his new friends and teachers, swinging and playing on the playground, sitting in circle time with the other kids to hear a story, learning new songs, and just getting the feel of being part of such a wild social scene. He was so partied out from all the action that he slept through snack time! He has an awesome full time para, Mrs. J, all to himself, and will receive speech, PT, OT, and vision therapies all at school. These will supplement the outpatient PT, OT, and speech therapies he receives through Colorado Children's in the Springs on Thursdays, and the weekly PT and speech therapy visits he's started receiving at home. We have really hit the medical/special needs resource jackpot here in Colorado (with therapy in home, through the hospital, and at school...plus his medicaid waiver and 6 hours a day with a CNA to boot {more about that later}!). Preschool is Monday through Thursday from about 8 a.m. until 11 a.m., but Otis will have to miss Thursdays to attend his outpatient therapies. We hope to get those rescheduled soon so Otis doesn't have to miss school. He really seems to enjoy being around other kiddos instead of being stuck at home with boring old mom and dad all the time. Not only that, he really does seem to thrive around other kids. I love seeing how curious he is as they run and play around him. Many of his classmates this morning seemed curious about Otis and his wheelchair, but were still a bit shy and standoffish. I think that will wear off very soon. Ryan will stay at school with Otis this week and likely through next to help the teachers, therapists, and para become accustomed to O's seizure activity and his different ways of communicating his needs.

Speaking of which...Ryan completed his CNA course on August 22nd, and is now employed as Otis's at-home CNA. For 4 weeks, Ryan attended class from 5:45 until 10 p.m. every weekday evening. He was able to start work immediately upon finishing the class, but will not be considered officially "certified" until he has completed a board exam, which he will do at some point this fall in Denver. Until then, he will receive a visit from a nurse supervisor once per week who will visit the apartment to make sure Ryan is caring for Otis (feeding, cleaning, changing diapers, washing hands, providing more therapy...etc) properly. It seems SO weird for him to be supervised on the stuff that we both have been doing in our sleep for the past 3 years, but if those are the hoops that we have to jump through to receive this amazing benefit, we'll do it! From what I understand, Colorado is one of two states (Florida is the other) that will pay one parent caregiver of a child with medical needs to be that child's CNA. They must first determine the level of services the child qualifies for, and then determine the number of CNA hours per week based on that. Based on his diagnoses (intractable epilepsy and his resulting disabilities) and needs Otis qualified for 6 hours a day of CNA care, but no nighttime or RN hours.

Otis is still having a lot of seizures and has had some ups and downs with sleep as we continue to wean his remaining seizure medication, but is still sleeping so much better (and for way longer stretches) than he did before we moved to Colorado and started medical marijuana. We have been able to very very slowly reduce his Onfi and are now down to 50% of what he was on back in early May. As we suspected would be the case, except for during the temporary withdrawal periods that occur in the week or two following an Onfi decrease, we have not seen an increase in seizures as he comes off the med. He is still on his original, super low dose of Charlotte's Web, which is approximately 25% of what is typically considered to be a "therapeutic" dose. We hope to bump that dose up very soon. As we do that, we will be working to find the magic numbers for Otis--both the right number of milligrams per pound of body weight of the medicine AND the right ratio of CBD to THC for his needs. 

Despite the continued seizures, Otis is continuing to work hard and learn new things. Back in late July when I was back in Lawrence for work, Otis suddenly decided he was ready to drink from a straw, and has been doing so ever since. Thank God for Facetime! He is also loving standing and learning the motions of walking in the gait-trainer that we have on loan from the wheelchair company. We are so eager to get our hands on the one we have on order, but it seems to have fallen through yet another a black hole with our health insurance. That's okay...we only ordered it in February. (Did you pick up that visual of my eyes rolling back into my head? I sure hope so :) .)

Snack time!

Mrs. J helping Otis catch up on his snack during story time

More photos and videos to come. After all, we have an entire summer to catch you all up on! Oh, and I should probably also mention that Ryan had foot/ankle surgery last Thursday to finally fix up an old injury. The surgeon was able to mend torn ligaments and clean up some bone fragments, all of which had been causing him quite a bit of pain over the past couple years. He is doing well, just trying to be patient and take things slowly as he heals. He has been able to get around on a pair of borrowed crutches these past few days, and will come home from his post-up visit this afternoon with what I'm sure will be a very sexy boot! 

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.


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!)