Hit and Miss

Some days are good, some days are not so good. However, good is still relative.
Cole still will not eat consistently. BUT-we are getting two out of eight meds in him daily. Success!
The drop seizures are still fantastically disappearing-only one or two a day. Success!

He is still having absence seizures and I think his night time seizure activity has increased. He has been super restless and has been waking up in the middle of the night a lot. It's hard to tell if he is seizing in the night, unless you are touching him. The overnight EEG at the hospital confirmed that he is having myoclonics, absence and some 15-30 second atonics in his sleep. I'll find out more about actual frequency when we see our neuro next.

Today I had to wrestle him to the floor and take a small morsel out of his mouth. It was not meal time, it had been left behind from a previous meal, and I had missed picking it up off of the floor. He bit me; hard. Can't say that I blame him, I would probably bite someone that was trying to wrestle food out of my mouth (when I hardly got any) too! His ketones have dropped to low today, even though he has been eating better than yesterday. I think that the only diet more difficult than this, would be Prader Willi Syndrome. At least I feel that he is starting (barely) to get in a rhythm.

Cole and I are a little fried from Daddy being just a shadow of a presence this month. However, things are looking so good for him and all of his presentations, conferences, interviews and classes have been going really well. There are people out there that are recognizing just how talented I already knew he was. Too bad that you can't "get your name out there" via Skype! ;) I am so proud of him. I know that he is burned out too. He's going to actually be home for four straight days this week-Hallelujah! One of his trips was cancelled last week, so we got to go to his graduation banquet. It was wonderful. Good food, and a whole evening with just the two of us-it's been a while. He is really already starting to miss his team. After three years of 6+ hours a week in class and more on the phone, you become a little family. Part of me can't believe it's really over! Being Brian, he wrote me the sweetest card and gave me a small gift at the end of the night, telling me how much he appreciated my sacrifice. It was a tearful moment for both of us, as we reflected on how hard the last three years have been. I am so grateful that we have done it together.

The potty training thing is not really going so well, but we don't have a deadline. I know, it's crazy to add it on top of everything else, but the dietitian really feels it is important to train his body. Cole's speech therapist looked at me like I was insane when I told her we were doing it because it was recommended for kids on the diet! :) She e-mailed me a program that she uses for kids with disabilities and we are going to take it slow and steady. Speaking of therapy, we are losing our speech therapist and Cole's teacher is not far behind. Of all of the times to get pregnant and quit ladies! Occupational therapy will not start until August and hopefully they will have a replacement for speech by then. Cole is still behind in most categories, but his progress is remarkable. Even just these few weeks on the diet have brought more words and funny responses. A few days ago, he dug in the drawer and pulled out his swimsuit. He held it out and said, "Go to the beach, Momma?" I didn't know whether to laugh or cry. It's always been a happy place for him. So-hopefully, if we can get him consistent, we can go to the beach soon. You've gotta have goals, right?