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. 


Anonymous said...

Well put, Kathy!
Love you and Otis and all the beautiful people in our lives!
Happy Birthday, Otis!

Anonymous said...

Happy birthdat Otis. I think you are a wonderful and brave little man.

Kira James said...

Thank you for the update and a very Happy Birthday with many hugs to a handsome, loving little boy!

Kerrin Stokes said...

I really love his Cheerios video- we love you Otis- happy birthday gemini baby!

Lynne Mersch said...

Thanks for the update and fabulous pics. Look how high Otis is holding his head up. Way to work in some therapy while taking pictures!! Happy Birthday to a handsome 3 yr old. Miss you all.

Anonymous said...

Otis, happy birthday handsome little boy! And thank you for the update. I have you guys always present in my thoughts and keep my hopes up for more positive developments. You have an incredible ability to fight and keep moving forward!! Love it!

Emma Fernandez

Anonymous said...

Kathy and Ryan, I loved reading the update on Otis, and I'm so thrilled he is sleeping better! Your pictures are great and Otis' eyes are just sparkling! Can't wait to read about his continued progress.... keep up the good work!

Kris Marsh