16 months

Otis had his 16 month birthday on October 14. He's definitely looking more little boy than baby these days!



Otis seems to really love experimenting with his voice, and makes all kinds of fun squeals, hollers, and sing-songy sounds. He is still rolling like crazy, and seems to really enjoy being held in standing position, with his feet on the floor. He likes to stomp and show off his awesome dance moves while in this position, and one time last week he even smiled and giggled like he was having the most fun ever while Daddy was holding him like this.

We've noticed Otis using his right hand a lot more lately, and occasionally he'll reach for his cup or bottle with BOTH hands instead of just the left. He still loves to grab at our faces--especially our mouths--with that left hand. He's usually had that hand in his own mouth as well, so we tend to get slimed whenever we hold him.

Otis got his third haircut from Mama and Daddy about a week ago. It took about an hour and a half (like the other two), but we're pretty sure this is the best one yet! We took a "before" picture, but by the end we were so tired and relieved that it was over that we forgot to take the "after" picture.

Unfortunately, there is not much news to report on the surgery front. We have found ourselves in a bit of a frustrating holding pattern since our return from Cleveland late last month. We are actually still trying to figure out exactly what to do about the keto diet. The surgeon at CC won't operate on kids who are on the diet due to the risks that it introduces (high CO2 levels in the blood of kids who are in ketosis, regulation of blood sugars during surgery, healing time tends to be longer for people on high fat diets, etc), but O's local team has been very reluctant to take him off of the diet.

One reason is that they feel as though the diet may be offering Otis a better quality of life, regardless of whether or not it's doing much to actually control seizures. At 150-300 seizures per day, we would say that the diet is NOT offering Otis a better quality of life. After repeated warnings to us that once he goes out of ketosis, the diet may never be an option for Otis again, the local team has agreed to work with us to do a slow wean of the diet, reducing the ratio by .25 each week. The diet coordinator at CC had recommended weaning down to 3:1 (where he is now, as of last Saturday), get a surgery date, then do a quick wean in the 2 weeks leading up to surgery, dropping the ratio every 2-3 days. The local team disagreed with this plan, and advised us that if we were to decide to go that route, they would no longer be able to be O's keto team--we would have to switch the management of his diet over to CC. We decided that the slower wean would probably be best and safest for Otis, so we will continue to work with the local keto team.

Then there is the matter of the MRI from CC getting held up in the mail, and the CC epilepsy conference and MRI result notes (unbeknownst to us) not making it to Children's Mercy as we thought they had. I asked CC to re-fax the stuff on Tuesday, and our local team confirmed that they FINALLY received the disc of the MRI images yesterday. We are now just waiting for Dr. A to review the results and then call us to let us know whether or not he agrees with CC that surgery is the best option for Otis at this point. We know that before seeing the MRI, simply based on past EEG findings, he was not convinced. We are anxious to see if this changes. We are also VERY hopeful that his review of the results will prompt a conversation between Dr. A and Dr. L, as there has been no direct communication between the two teams so far. Once that has happened, we may get a little closer to firming up a surgery date.

As you remember our little family in your prayers, we ask that you please pray that we find the strength and courage to make our way through this difficult time, and for the wisdom to make the right decisions for our little Otis.