Wednesday, January 15, 2014

Day Two - Let's Do This
I Got This.

Wow, what a difference a day can make.  Yesterday was a little rough but today I felt strong, ready to take on the world or in this case, Owen's epilepsy and my tumor, bring it on... I am SO ready for this! 

Owen slept great last night, went down around 8pm and slept until 6:30am.  We had to get up once or twice an hour, every time he stirred to readjust the wires but Owen never woke up during any of it.  Then at 6:30 he woke up with biggest smile, asked if he could open a present and asked to get in a costume.  As you can see below, today Owen was Robin!  He LOVED his Hulk piggy bank, thank you Auntie Kim, Uncle Fish, Emma and Ben!

So the morning started off good for us and I was feeling a lot better too, both physically and emotionally. We were lucky and the nurses put in a request for the doctors to come and do rounds before I had to head to Froedert for all my appointments so his neurologist came in around 9:45am.  We actually got a lot of info out of him.  He said he was seeing a LOT of activity on the EEG.  When they say activity they mean abnormal spikes.  It means he isn't having an actual seizure but his brain is sending spikes that should not be there.  He said his reading during his night time sleep had the most.  Some of it was continuous. Kind of scary because when Owen sleeps is the one time that Jamie and I can actually breath and apparently this is the time Owen is having the most stuff going on in his head. This is not good for two reasons.
#1 - he is never really getting good sleep and into a deep sleep which obviously affects you  
#2 - just like really severe seizures affect your overall intelligence and physical abilities these extended periods during his sleep of abnormal brain activity can have the same affect.  So essentially all day long he works so hard at therapy and school to improve and then slowly at night his brain is acting up to basically have the opposite effect.  It's not super severe but just not good and that slowly over time it will have an effect. 

The good thing is that so far all the activity they are seeing is starting in one area.  The neurologist was talking the whole time as if Owen is going to be a great candidate for the surgery.  They still want to get a few seizures recorded but from what he has seen already, it's looking good.  He said the area of his brain that all this is starting in is also a better area than others.  This area isn't responsible for a ton of function AND they think Owen has rerouted a lot already anyways.  The plan is to start sleep depriving him tonight in hopes of getting a few seizures tomorrow.  He will only be allowed to sleep from midnight to 5am so we will have our work cut out for us tonight.  This should most definitely bring on some seizures.  It is 7:50pm right now so we've got to keep him awake and engaged for another 4 hours before we can all go to bed and then the nurses will be waking us at 5am.  We should most definitely have some seizure activity tomorrow.  

Owen's neurologist went into some of the details of what the actual surgery involves.  They would be able to start moving forward with it immediately but we will have to wait until my radiation is through and I am back to 100% and THEN we will potentially be going right into prepping Owen for brain surgery.  Scary and amazing to think of at the same time.  The technology they have today is pretty amazing.  He would be in the hospital for about 2 weeks for the actual surgery.  There is a bit of prep ahead of time including placing a mesh map directly onto his brain to help them figure out EXACTLY what part of his brain to remove.  They would actually do a special MRI for him while the mesh was on his brain where when he was in the MRI machine they would ask him to do things like tap his fingers, talk, move his legs, etc and they would be able see exactly what part of his brain is responsible for that.  So we would go into the surgery knowing if the section of brain they are removing is responsible for anything.  As scary as it is, the thought of getting rid of his seizures, the meds, the abnormal brain activity, it's pretty awesome.  We may actually be able to go in and make Owen feel SO much better!  The idea of being able to go in and do something to help Owen feel better every day of his life is just awesome to me! 

So literally right after this talk with the neurologist I had to leave to walk to Froedert for all my stuff.  So this is the mask that was molded to my face today.  This is a picture from the internet, not me but this is exactly what it looks like.

 So they molded this today, I had a cat scan and then an hour long MRI.  I was a little antsy in the MRI machine, an hour on a super hard flat table with your face literally stuck in this skin tight plastic mask that is locked down to the table.  So this is what I will wear for each and every radiation treatment.  I go in Wednesday, January 29th for a dry run to make sure everything is set to go and then start monday, February 3rd for my actual treatments that will last for 6 weeks and I will go Monday - Friday.  They went through all the side effects and said the #1 thing will be fatigue and headaches and they also said that with how they will be shooting my head from the stop there is a good chance I could experience nausea and vomiting.  Fun stuff.  And let's not forget the hair loss.  Hair should fall out 2 or 3 weeks in and will not even start to grow back in until 3-4 months after treatment stops which means I will hopefully start getting some fuzz by June or July. 

I was just so happy today to hear that we have a good chance at helping Owen feel better on a daily basis!  Happy to just be getting going with my stuff, knowing that I need to get through radiation and get myself healthy so we can then move onto Owen, talk about the perfect motivation.  I felt so great today while they were going through everything with me.  Confident, strong and just ready to do this.  Everyone that met with me today was so sweet too. I had people coming up to me in the halls hugging me telling me they were following my blog and praying for me.  Just warms my heart to know that I have so many people thinking of me.  It really does make such a difference.  I am SO lucky!  I never feel alone and that's amazing!

Well my dad just got into the hospital room so I need to run.  Four more hours to occupy Owen and then we can all head to bed.  

Thanks again to everyone for all the love and support.  Thanks to Christen for coming and hanging with me today at Froedert so I wasn't alone.  So nice to have a girlfriend along to pass the time.  Special thanks to my sister Kim who helped with Jacob and then spent the day with Jamie and Owen.  My parents are in town to hang with Jacob tomorrow so that will be nice as well.  Lots of help is coming in from everyone to make this all work.  I am pretty sad tonight thinking about Jacob and how much his world has changed, his mom and dad literally just disappeared for a week but I know he is in good hands and is being very loved but I am definitely looking forward to getting back home and loving on him myself!!!!  I miss that little crazy man!!!! 

So here's to us moving forward!  Getting me and Owen better!  Getting us back home as a family.  It has to go up from here!

Here is a quote that my friend Christen shared with me>

"Maybe who we are isn't so much about what we do, 
but rather what we're capable of when we least expect it."

I couldn't agree more! 

I feel so good today, so happy, so ready I want to scream this from the rooftops....


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  1. Alison, You open that 8th floor window and scream it out to the entire city.... and they will even hear you in Seattle "YOU'VE GOT THIS". You courage today to go through all of this and come out wanting to shout..... is encouraging to all of us. And yes, how wonderful to hear that complete strangers are wishing you the best.... I think you have the whole world cheering you on. What a tremendous feeling... so many people there for you. And like you said talk about incentive.... the thought of Owen having relief from his epilepsy would be God sent. Start sending it God we ARE READY!!!!!!! Cheers to the future!!!

  2. Words cannot even begin to express how proud I am of you and how truly I'm in awe of your strength and determination. Owen's got that strength as well... directly from his mommy and daddy no doubt. Love you all so much... praying for you. Stay strong! YOU'VE GOT THIS!!!!


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