Waiting, Waiting, Waiting... for a seizure.
Well Owen did really well last night. Stayed up until 12:15am playing the wii, had a REALLY hard time falling asleep, he was obviously SO over tired. He finally passed out around 1am but slept pretty restlessly. We woke him up around 5:45am and he did not want to wake up. Poor guy was SO tired and probably really confused as to why we weren't letting him sleep. We thought for SURE he was going to have a seizure this morning, we can tell signs before he has one and we saw all the signs NUMEROUS times this morning but then nothing happened. So ALL day we sat and waited and nothing happened. He was SO tired, he went back and forth between being fine and happily talking and playing to in a second being so over tired he was kicking and screaming and flailing around in the bed. They had to come and move the 8 leads on that are on his forehead so that his skin didn't get irritated and that did not go well. We could barely physically keep him pinned down so they could do it. I lost it and cried right along with him, thankfully Jamie stayed strong and talked him through it. Then his IV pulled out so they had to redo that this afternoon, that was another disaster but it's in and seems to be working again so hopefully this one lasts until we leave.
Our amazing neurologist popped in to let us know that he saw a ton of activity again on the EEG and that for the 5 hours he slept last night he had lots of discharges. He really hopes to capture a seizure in the next twenty four hours. Owen will be going down for an MRI tomorrow at some point. We are hoping first thing in the morning because he can't eat or drink anything until after that is done. They are actually going to try and do the functioning MRI tomorrow, so he will be awake and they will have him do things while he is in there to see what parts of his brain are responsible for those tasks. I think it will either go one of two ways, really amazing and Owen will be a great listener and do everything asked of him or it will be an epic failure and he will kick and scream and be scared to death of being put into that big LOUD machine. As of right now, I am leaning more towards epic failure, the poor kid is SO tired and run down. He isn't even close to being able to walk independently at this point and talking is even getting difficult. He is constantly itching his head now too and asking when they can take off his hat. :(
Here's to catching a seizure first thing tomorrow morning, getting right in for an MRI that Owen rocks and then getting him back on his meds so we can hopefully be home by Sunday! That would be ideal!
We got a little stir crazy today just sitting around WAITING for seizure so all the gifts and busy bags came in handy today! We did lots of activities.
A special thanks to Jess who gave Owen the biggest smile of the day. Our room is situated so that we can see people as they walk down the hallway and all of a sudden we saw a HUGE batman balloon and two spiderman balloons and they were for Owen! He LOVED them Jess! They were on his bed ALL day. So sweet of you and the gift card will be used tomorrow for treats and presents!
He also got a new Hulk mask from his Uncle Adu. How awesome is this?!
Other than that, we just hung out for the day. We really have no concept of time when you are here. Around 2pm I realized it was the 16th, exactly one month since my brain surgery. So weird, it seems like so long ago, yet it seems like forever ago, yet I still want to think it's just a dream that never even happened to begin with. But it's real, I have a big old scar and bald patch of skin on my head to prove it. Hard to believe how much your life can change so quickly, in an instant. I think of families that have greater struggles than we do, families going through similar situations but with no help or support, people that are struggling alone with no family at all and I can't help but be thankful. Yes, I know we have so much on our plates right now and yes I sometimes I have to stop reading comments people write about us because it's a reminder of just how crappy our situation is BUT how lucky are we to have so much love and support?! I have seen SO much good in people in the last month it has forever changed me. Emails, gifts, cards, meals, texts, hugs, everything from family, friends and complete strangers has opened my eyes to a whole new world.
Why don't we always act like this towards each other? I know I am sharing my story and making it very public but lots of people are struggling right now. Just because they aren't blogging about it and sharing it doesn't mean they don't still need the support of others around them. When I was in Target a few weeks back it felt so weird walking around, knowing my story, knowing I had this brain tumor yet it was like my secret. What if everyone knew, would they treat me different? Would they not scowl at me if my cart was parked in front of the diapers they needed to grab? Would they just smile and patiently wait while I tried to find the size 5s for Jacob, instead of rudely grabbing a box from right in front of me? Isn't that the way we should always treat everyone, with love and respect, patience and understanding? Because we WANT to, not because we know there is some terrible thing happening in their life. When I made my walk from Children's to Froedert the other day for my blood draw and was about to start crying a man walked by me and simply smiled a nice warm smile and it made me feel so much better. How hard is that for us to smile at someone? Hold a door? Give a compliment? Just a simple thing, you have NO idea what an impact your small gesture could make on their day. You have no idea what they are going through right now and maybe that one small gesture you made is exactly what they needed at that exact moment. Imagine how amazing the world would be if we all lived our life that way.
Lucky for me, I don't have to imagine... I am living it right now, people are going out of there way to make me feel loved, supported, cared about and I can tell you it IS amazing and I wish that for EVERYONE!
Well I will hop off my soap box for now. Still hard to believe a whole month has gone by. Hard to believe as much as we have been through already, the true battle is just beginning. Radiation from February to mid March and then hopefully the chance for Owen's surgery shortly after that. THEN my family is going to have the MOST AMAZING SUMMER EVER IN THE HISTORY OF SUMMERS!! I am thinking water parks, camping, bon fires, early morning bike rides, picnics, twice a week trips to the zoo, planting a small garden, festivals, corn on the cob, fireworks, sweaty little boys that are dirty and sticky with sunscreen at bed time.... yes... that is what I can't wait for! This spring will be crazy but summer... summer will be AMAZING!
Owen insisted on taking a few photos of US today so I will end with that. Here's a few that he got. Love this one of me and Jamie. Not sure what I would do without this man in my life. He may need a whole blog post just about him one of these days for me to thank him for everything he does for me and the boys. He definitely is carrying the weight of the world on his shoulders right now but you would never know it. Love you more than words could ever explain Jamie!
Good night! Thank you so much for following our story!