A Different Boat

I have so many overwhelming emotions related to our overnight hospital stay with Wes and I'm still not ready to unpack all of that. So, here are the facts. The EEG was anything but definitive. It showed a lot of abnormal activity including lots of non-seizure spikes in electrical activity. This means they didn't catch any seizures on the EEG, but it is still very likely that either he is having, or soon will start having seizures. The neurologists recommended starting Wes on a seizure medication called Onfi which should prevent any seizures from happening and should help relax some of his abnormal muscle tone as well. Seizure meds are scary because they are designed to mess with brain chemistry even though our understanding of the brain is fairly primitive still. This medication, although highly addictive (which majorly scares me), is supposed to have fewer side effects than most. We're starting with a low dose given at bedtime,since the main side effect is drowsiness, ...

Do you want the good news or the bad news first?   Good news: Wesley has graduated from wearing his helmet during the day! He's on nighttime only helmet wearing for the next month and then will hopefully graduate all together. It's so nice to have his sweet little head to rub and kiss again. He seems happy to have his head free and his head control seems much better now that the weight of the helmet is off. I'm glad he won't have to wear it all summer in the heat and get all sweaty and smelly. His head looks wonderful by the way! The front is definitely still pointy (although not as bad) but the back is actually symmetrical. I don't plan on giving him a buzz cut anytime soon because his head is still kinda lumpy, but it doesn't look like a triangle from above anymore! When he officially graduates I'll post sone before and after shots.   Bad news: In the past week, Wesley's physical therapist and his ophthalmologist both, without any prompti...