Hansen Family Tribune

I have no idea who knows what, so I thought I'd give everyone an update on this lovely vehicle of information. This is long as I gather thoughts in my own head so I hope its actually new info for you.
Our handsome Evan has had a rough first half of the week. A little back story: Angelman syndrome is prone to seizures. Over Evan's lifetime, we've witnessed a few minor ones-when he would wake up for example.Last September he got sick with a fever and in one day he fell about 4 times from what I call "drop" seizures where his body just loses consciousness and control and he drops wherever he is. No convulsions, just loss of muscle tone and consciousness for a very brief few seconds. Last fall he dropped and then he also had a longer seizure when we put him to bed. Kind of scary, it was a reality check for me, but that was all. I associated it with his fever and nothing happened again until he got sick again at the beginning of February.
Then last weekend he had a seizure on Thursday or so and then another one on Saturday. Random since he's not sick. On Sunday, he had one while with his teacher at church. They had gone outside to enjoy the warm weather, he laid down in the sun and convulsed. Which added some excitement to church that day by having an ambulance called and arrive to check him out(Oliver and I weren't there to tell them it wasn't needed). He then slept on the hallway floor during the 3rd hour of church because Ryan really wanted to go to his primary class. He then had another seizure on Monday. The rest of the week was clean. He didn't have any seizures despite me informing his preschool teachers and Tyler our fantastic cousin who has been babysitting while I go to meetings. So I thought we were passed whatever these seizures were. Despite the sudden stop, I went ahead and set an appointment up with the pediatric neurologist who helped diagnose Evan. The soonest appointment is the first week of April.
Then this last Sunday happened. Evan seized right before we were going to go to church. Then he had another one while we were visiting the Creek House to see Beth and Mom. Then he had another one while I was laying next to him in bed trying to help him go to sleep at 3am. As I lay there I calculated it out and he'd had 3 seizures in 15 hours. It made me nervous and I decided to take my mother's advice from the week before and get in to see his pediatrician.
On Monday, Evan was really lethargic. I knew things weren't quite right but at the beginning of the day I kind of connected it to exhaustion from the day before, being awake until 3am, etc. But he kept having drop seizures. Pretty often. I put him on the couch often, hoping he'd stay there for a while before trying to get up again because he'd just fall again and hit his head again. I tried to set up an appointment but called during their lunch hour. Then Evan had another convulsion at 3pm. I quickly called after that to set up an appointment and got one for the next morning at 11:30am. The drop seizures continued that evening. He actually got up and behaved like himself for a brief period of time-smiley, waving, happy. His energy still wasn't great, but I was just thrilled to see "Evan" again after the day of lethargy. Then he had another convulsion at 8pm. And then another one at 11pm. But he slept that night at least. I decided not to take him to school the next morning so that he could rest. Which was smart because he had a seizure Tuesday morning while I was in the bathroom. His drop seizures weren't decreasing, but I truly felt like I had to be within 1 or 2 feet of him so that when he dropped I could catch him or help hold him up. We went to the doctor's office and they determined that he's healthy. No cold or flu or anything. While in with the doctor Evan had a few more drop seizures and then convulsed very briefly-like 10 seconds. I think that since the doctor saw it, he decided to act a little quicker and asked to step out to contact the Primary Children's Neurology department. He got a hold of someone and they prescribed an anti convulsant drug for Evan and said they'd try to get him in sooner(which hasn't happened yet, two days later).
That appointment wore me out. I had not taken out the stroller so I'd carried Evan up to the appointment and back down. He's a pretty solid 45 or 50 pounds and on the way back down he wasn't as cooperative. I was pretty emotional. Ryan was still as high energy as normal and I didn't have the patience for him(he was climbing everywhere possible in the little exam room, then ran ahead of me down the outside stairs and then starting getting upset when I told him we weren't going to a restaurant for lunch). I then called Tyler and asked him to watch Ryan that afternoon while I focused on Evan. We gave Evan his first dose of the anti convulsant and after taking a 2 hour nap, he was almost normal again. Finally mischievous again after 3 days of not.Able to stand up for longer periods of time without dropping. He hasn't had a seizure-convulsant or drop-since we started the medication.
Yesterday was a day of huge blessings which I'm not going to get into right now because that's an entire blog post on its own. But Evan is at least doing better. At this very moment he is standing up watching a cartoon and playing with a toy. He is sturdy. He is interacting with me with his eyes and his body. It's great. I hope the story I shared made up for the length of the post. We are very grateful for our beautiful supportive family. For Mom & Beth being here. For Dad for the concern over the phone. For Chelsea who sent a sweet message to me via facebook yesterday. We are grateful for all of you and we love you.