It was nice while it lasted...

Well a lot has happened this past week and I wish I could say it is all positive. It all started last Wednesday. Finn started acting very strange, a lot like how he was back in January and February. Very needy, crying as soon as I would put him down, not sleeping, and very twitchy. At first I thought it was lack of sleep. He didn't sleep very well Tuesday night so I just went about our day, keeping a close eye on him but didn't see anything too disturbing...until Wednesday evening. When I was getting Finn ready for his bedtime bottle I saw it...a seizure. He had 2 seizures within minutes of each other. I was scared. I was alone (Ethan was out of town) and I wasn't sure what I should do. I gave Finn his bottle and he seemed to be ok. Still very twitchy but not having seizures. I decided to try really hard to get Finn a good nights sleep and I would call his neurologist in the morning. Trying to get Finn to sleep when he is acting like this is near impossible. His twitches wake him up and make him cry. Wrapped in his weighted blanket and the weight of my arms I was able to get him to sleep. I decided to have Finn sleep with me that night since it was essential he got some sleep and I just couldn't risk putting him down and waking him. Finn was able to sleep through the night wrapped in my arms. Me on the other hand, I did not sleep at all. I cried silently to myself all night. Terrified of what was happening to Finn, what other challenges we were going to have to face in the morning. Morning came and Finn appeared to be a little more normal and less twitchy. I still called neurology first thing in the morning in hopes that they could get him in right away. I called Ethan and my mom very sleep deprived and crying. Ethan left his business trip early and came home. My mom called off work and came down. We all waited together to hear back from his doctor. Finn seemed fine. He was happy and smiley and started to act totally normal. I started to think that maybe I had overreacted. Maybe he was just having a bad day. Maybe I didn't see him have a seizure. Neurology decided not to take any chances and wanted him to come in to have an EEG the next day. Even though Finn started to act normal I noticed that he felt very hot. I decided to take his temperature and sure enough he had a fever of 102. This was the first time in 16 months that Finn was sick. That would explain his strange behavior. Feeling a little relieved I went into the EEG appt feeling pretty confident, since fevers can cause seizures in kids who are already susceptible to seizures. Finn's fever went away, we had a nice family weekend, Finn was back to normal. Everything seemed fine again. Until I got a call from neurology on Monday evening. Finn's EEG came back abnormal and showed that he started having seizures again. They want to start him on Topamax. I was heartbroken. I was so confident he was ok. Even though I had been preparing for this news for 7 months it still came as a shock to me. So we started Topamax last night and it will take a month for him to get up to the dosage that they want him on.

Another bit of shocking news happened yesterday. Finn had an appointment with physical medicine. These are the doctors that will be getting him all his adaptive equipment that he needs. The doctor examined Finn and told us that based on what he is seeing in Finn he has a new diagnosis for him. Cerebral Palsy. When he said that, it felt like my heart was ripped out of my chest. Up until this point the only medical diagnosis was developmentally delayed...they didn't know how else to categorize Finn. But this doctor said that based on Finn's motor skills (or lack thereof) that he meets the Cerebral Palsy criteria. This also helps for insurance purposes and helps us get all the adaptive equipment that Finn needs. The doctor also talked about putting Finn on medication for his tone issues. Since Finn's seizures started up again he does not want to use Baclofen, since that med can affect the anti seizure med. So he wants to start him on Valium. This was the drug that I do not want Finn on. It's a very strong drug and it makes me nervous.

We have a lot of decisions we need to make in the next few months and I just hope that we will make all the right ones. Finn continues to be his happy, smiley self. He never ceases to amaze me.