5 Month Photos and UPDATE

We received a confirmation from a keto nurse at Children's Mercy yesterday that they have a spot available for Otis to be admitted on Monday. Although we've done a ton of research on our own and feel as though we're pretty well educated on the subject, we still have at least a million and one questions to ask before starting Otis on the diet, and said that we would really like to have a chance to sit down and discuss it all with someone before marching ahead. Luckily, Otis's new neurologist, Dr. Abdelmoity, had some time available for us on Thursday, so we'll go tomorrow afternoon to talk to him. While we're there, we'll also have the opportunity to meet with a few others on the team of people who will be working together to get the diet started--the neurologist, nurses who specialize in the keto diet, dietitians, and a social worker, to name just a few.

Otis was switched to Dr. Abdelmoity because he is one of two docs on the clinical neurology team who specialize in the ketogenic diet. Fortunately, his original neurologist, Dr. LePichon, will be on inpatient service while we are there next week, so he'll play a large role in administering the diet and monitoring Otis as well. This is a relief to us, since we have developed such a good relationship with Dr. LP over the past couple of months. We know that all of the neurologists at CM work together as a team and that each one of them is incredibly competent and talented, but it can be frustrating to be admitted to the hospital only to have to begin working with a "new" doctor who isn't as familiar with Otis and his situation as Dr. LP is.

The nurse I spoke to yesterday assured me, as Dr. LP had, that Children's Mercy has one of the largest ketogenic diet programs in the U.S., after Johns Hopkins. They currently have about 100 kids in their program. And--good news--Children's Mercy does NOT do a fasting period before beginning the diet, which is such a relief to us. The nurse said that it may get them to a state of ketosis much more quickly, but it's no good for anyone to make kiddos feel terrible and cranky just before introducing such a big change.

Instead, they'll begin to introduce the ketogenic formula to Otis very gradually, mixing a little bit at a time in with his regular formula and increasing it at each feeding until he has been able to tolerate two full feedings of just the ketogenic formula. While that is going on, he will be tested frequently to see when he has reached a state of ketosis. Once he has reached ketosis and has shown that he can tolerate the formula, we'll be able to go home. The nurse said that if all goes well, we'll probably be able to go home next Thursday or Friday. We'll be sure to post updates to keep everyone informed of Otis's progress.

And now, some photos to keep everyone updated on his cuteness:



smiles! (you would not BELIEVE how difficult these are to catch on camera)



all spiffied up in honor of uncle taylor's 30th birthday

And a couple of videos....

If you're prone to motion sickness, you may want to pop a couple Dramamine before watching this one.

I love this one of Otis giving us some of his very first big smiles. This video was taken on August 15 while we were on Otis's first road trip to visit our great friends Josh, Kate, and Charlie Mae in Colorado. This was just 4 days before we noticed Otis's first spasms. I know I sound like a broken record, but we're so happy to have that smile back!