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

Saturday, June 14, 2014

Happy Birthday, Otis!!!

It's so hard to believe that our baby is NOT a baby (or a toddler, for that matter) anymore! Otis had a pretty great night of sleep last night following a few difficult, seizure-filled nights (and days) leading up to the full moon. He woke up this morning and had one of his favorite breakfasts of yogurt with blueberries and Cheerios, which he has become a PRO at feeding to himself! It's shaping up to be a beautiful, warm, sunny day here in Manitou, and once we're all up and around the plan is to celebrate the day by taking Otis swimming at the Manitou pool. And since this will be the first birthday Otis will be celebrating OFF the ketogenic diet, he will be able to enjoy some applesauce (his favorite) birthday cupcakes with cream cheese-honey frosting while he opens his birthday presents!



Here are some glimpses of birthdays past...
June 14, 2011...this was taken several hours after my water broke,
and right before I mixed up that magical castor oil + Ben & Jerry's "eviction" shake
that finally got the party started


The Birth & Women's Center in Topeka, where Otis was born

The room where Otis was born!



Our first photo as a family, at the Stormont-Vail PICU just a few hours
following Otis's dramatic (/traumatic!) entrance

1st Birthday





2nd Birthday

NOT impressed with his ketogenic banana birthday pancakes 
(...or his terrible haircut. Sorry about that, dude!)


3 years old!!!





We have been so terrible at posting updates here! Sometimes it's just hard to stop and write when you're in the middle of trying to just be present and live it. Otis is continuing to do pretty well on his low dose of Charlotte's Web. While we have not seen a significant or consistent reduction in seizures yet, we have seen HUGE improvements in sleep, which is a really really big deal. There have been many many nights in the past several weeks since starting CW where Otis has slept between 6 and 8.5 hours STRAIGHT without waking up with seizures. Nights like this were almost unheard of before CW. He has had more full nights of sleep in the past 5 weeks than he has in his entire life. 

His typical pattern until CW was to wake up every 2.5-3 hours with clusters of seizures. EVERY. NIGHT. Even on these new good nights, Otis will still wake up with a pretty big cluster in the morning, as is typical for him, but if he is coming off of a full night of sleep that means there are 2-3 usual clusters of seizures that just didn't happen, and that his huge--a big sign that we are moving in the right direction. 

We are in a bit of a frustrating place with the one seizure med he is still on (Onfi/Clobazam). Because it has the potential to interact with Charlotte's Web (CW works to inhibit the same group of liver enzymes that are responsible for breaking down Onfi and other benzos), and because the Onfi has never helped to reduce his seizures, we have begun to very very slowly wean him off of it while keeping the CW at a very low dose. Otis's neurologist at Children's Mercy, Dr. A, is guiding us through the wean, and we are keeping him updated on O's progress. We are actually proceeding even more slowly on the wean than Dr. A recommended just to be cautious, so we can keep a close eye on any withdrawal symptoms that may start to develop. So far nothing terrible, although we do notice a temporary increase in seizures a few days following a dose drop. This lasts a few days, and then everything seems to return to baseline.

Otis has a new Cube Chair and tray now which he is slowly learning to like (those of you who know Otis will also know how much Otis dislikes having to work, and how crafty he is at getting out of it!) and we hope to receive his new gait trainer from the wheelchair company very soon. Otis has been working so hard with us (mostly Ryan, since I am still doing my KU Policy Office work from home for several hours each day), but we are eager to get him back into the groove of getting the rehab/therapy services he needs. He really misses his tiny-k coach and OT Aña, and his friends Miss Lynne, Miss Erin, and Miss Robin at the Rehab Institute in KC. 

There is so much more to catch you all up on--namely, what Otis is up to and all the awesome things he is learning to do--but I will save them for another post. In the days and scary months following Otis's diagnosis of Infantile Spasms when he was just 2.5 months old, I would frequently wonder what our lives would look like 2-3 years out. Sometimes that wondering would lead me to worry and then sheer panic over what this horrible disease might do to our little boy. I wondered how we would ever manage to take care of him and manage his disease while continuing to work and live and just hold our lives together. I think of all that worry, and look at where we are now, and how well Otis is doing in spite of his seizures and other challenges, and I am just amazed at how far we've all come. We are so fortunate to be surrounded by such a loving and supportive community of friends and family who have held us up along the way, praying for us, lifting us up and carrying us through the dark days and more troubling times, and sharing in our joy and celebration of the good stuff--like today, as we celebrate three years of Otis blessing our lives.