Sunshine

The last few weeks have been full. Changing meds, the echo, the eye exam, the genetics appointment, trying to decide when to move, Cristine's graduation and a trip to St G. Wow, it is hot here! I love it.

A little Reader Digest version of a medical update:
We have been decreasing the Keppra. I am not ready to add Depakote yet. Stiripentol may be in our future, but I want to try some other things first.
Cole's eyes are physically healthy. The photosensitivity is completely a neurological issue. The ophthalmologist wants to keep tabs on us though and finds Cole's story intriguing.
The echo did not show a hole in his heart. However, my huge hole did not open up until I put pressure on it by bearing down. Cole was sedated, so we will probably re-do this test in a few years. We will be going to the cardiologist and asking for a 24 hr Holter EKG. This to rule out Long QT Syndrome, something that was brought up to us on Cole's very first inpatient trip to Primary...but for me. I do not have Long QT, but it is what led me to find my 5+ PFO.
Still having the new seizures types. It seems that we need to also add patterns to our list. My mom's rug upstairs seems to trigger him now. He had a 7 minute seizure on Sat and I thought it was going to be a foreshadowing of our little trip. Fingers crossed, no major seizures since! Still having these weird jerking spells, probably tonic-clonics that are short. Sad that we can't recognize them unless they are 20 minutes long!
We are becoming more concerned about SUDEP after the conference, and are on the hunt for a pulse oximeter. I used to be one of those people who wished that I could just die in my sleep, peaceful with no struggle. Now that I know it could be the way Cole goes, it freaks me out. I think I want to say good-bye-or maybe have a warning. I'm still coming to terms with the increased SUDEP factor with Dravet. When we were in CT and the speaker asked who in the room slept with their Dravet children, it really helped me to notice that the majority of the people there raised their hand. Great! I'm not the only crazy one. :)
Cole is still not eating great, but I am not as worried about food as I am about fluids.

In the midst of these new seizure presentations, there have been great things happening. I think we were right about the Keppra becoming toxic. Cole's behaviors have been better the last few days after the drop to 4 mL's. Less violent. We installed his new Airwalker swing and it is incredible. He loves it and I don't have to feel like my shoulders are going to pop out when I swing him in a blanket. He went swimming for the first time since his birthday in Jan! This was a huge risk and made me nervous with the combination of temperature changes and chlorine. There were plenty of small seizures, but no big ones, so we just stayed in the pool-hat, glasses and all. We've been twice since! He still has no fear and poor impulse control so we have to hold him the entire time. He just jumped off of the side yesterday when my head was turned. Even though I had my hands around his waist, I wasn't ready for it, so he went completely under. Our little daredevil ;) He has been outside for short periods every day this week and has been okay. He is loving having other people around-Mr. Social since the day he was born. He is having a great time playing with new toys and watching Cars. You know he is having fun when he can go the entire day and only ask about Daddy once or twice. Brian is working it at the conference and people are very impressed. "Let's go out with a bang", I say! He's worked really hard to build this incredible agenda. I'm proud of him. Mr. PIO has to leave us tonight and go back to speak in SLC tomorrow. Then, he will make the drive sometime between Thurs night and Sat morning to bring us back on Sunday. It's hard to be popular! I hit up some awesome sales at the outlets and have Cole partially clothed for fall and winter. How is it that when they say certain things should happen during a treatment, that I still believe them? I really should have learned my lesson by now! Cole is still growing, out and up, on the diet. He is around 3 feet 2 inches and 33.2 pounds at the last visit. He needs 4T tops to cover his new belly, courtesy of heavy cream and oil. He is in 3T pants, because he is his fathers son and his waist is still skinny. Most likely, a belt will be in his future if his daddy is anything of an indication of how things are going to be when it comes to pants :)

Stay tuned for some more great news...