Saturday, May 10, 2014


We made it! We arrived in Colorado Springs on Monday night, after 12 hours on the road. Ryan drove the moving truck and Otis and I followed in Nuby (our Honda). Otis was such a great little traveller. He tolerated so well being strapped into his carseat for hours on end, but was really really happy to finally be able to roll around and stretch out once we reached our destination.

Manitou Springs, where our apartment is, is a really fun and adorable little town just west of Colorado Springs. All of the services we need (groceries, laundromat, pharmacy, etc) are located in bigger, more commercial Colorado Springs, but it seems like there is plenty of fun stuff for us to see and do here in Manitou. We've met many of our apartment complex neighbors already, and so far everyone seems super nice. The first neighbor we met told us that he is from Lawrence! He noticed the Jayhawk on our patio bench as Ryan was unloading it from the truck and came over right away to introduce himself. We noticed later that afternoon that he had changed into a KU tee shirt. Rock Chalk, Colorado!

We gave Otis his first dose of Charlotte's Web/Realm Oil/CBD oil/medicinal marijuana on Thursday night. Ryan got a call from the dispensary on Thursday afternoon telling him it was ready. We didn't think we would be able to get it until at least Friday. Otis had kind of a rough day yesterday with many daytime seizures, but it really wasn't any different than the typical rough days he has once in a while. Last night, after his first full 24 hours on CW (3 doses a day), he slept for 8 hours in a row without any seizures. When he woke up this morning it was business as usual with a large cluster of them, and then another big cluster upon waking from his morning nap. It is difficult to tell just yet whether or not the sleep can be credited to the CW or just the chaos of the past week finally catching up with him. Regardless, it was great to see him get a rare night's sleep. He seems to be feeling much better today than he was yesterday. We are being very conservative with CW dosing and are starting on a very very small dose, which we will slowly titrate up in the weeks to come. We are also taking great care to stagger the CW dosing with Otis's anti-seizure med, Onfi, to avoid any potential interactions between the two medications.

Last night we drove up to Black Forest (just north of Colorado Springs, Manitou is just west of the Springs) for a bonfire at Ft. Figi, the home of the Figis (Charlotte Figi is the little girl for whom CW is named). The Figis hold a bonfire on their land most Fridays mofor all the Realm/CW families, friends, and the Stanley family to gather. We were able to meet some of the families we have been talking to online for so long. It is so wonderful to be able to meet and spend time with these wonderful people who are walking our same path.

Snuggles with Great Gramma Helen


Good-bye, house! Thanks for taking such good care of us.

Pajamas....or old timey swimmin' trunks?


Fixin' to hit the road

Enjoying the ride

Almost there! (taken by a dude traveling in a PETA van) 


First dose of Charlotte's Web (Otis slept right through it!)

Doot doot doooo, lookin' out our front door!

Feeding himself Cheerios like a BOSS.


Anonymous said...

Love the pics and so glad you are there and started with the CBD oil. Miss that pumpkin!! Keep the updates coming.

Anonymous said...

These pictures look beautiful! I'm glad you are liking Colorado so far. I keep hoping for things to get better and better :) Kisses to the three of you!