Tuesday, March 11, 2014

Just an average day in our house

Had just another normal day in our house 
that consisted of.....

1. Dropped Owen at school, he did great thank goodness!

2. Drove to the hospital for my radiation treatment

3. On the way in, received a call from Owen's neurologist and discussed how he is a candidate for brain surgery.

4.  Had my radiation

5. Called and scheduled myself, Jamie and Owen to go talk with a child psychologist.

6. Burnt my new synthetic wig while taking dinner out of the oven.

I mean really, how much crap can we deal with in one day?  Radiation, brain surgery, psychologists?  After we put the kids to bed Jamie and I sat at the dining room table to talk.  I took off my wig and tried to cut out the burnt parts while we cried, laughed and talked about how we have so much going on right now.  I mean seriously, anyone else discuss brain tumors for themself, brain surgery for their five year old WHILE crying and trying to cut burnt hair out of their wig... anyone, anyone?  No just us?  I figured.

So the good news is that we did get news that Owen is a good candidate for brain surgery.  They presented his case to the surgery board this morning and they called us right away with results.  The bad news... the one missing piece to the puzzle is what part of his brain is now responsible for his language and speech.  Generally the left side of your brain is responsible for it but because Owen has so much brain damage on the left side, we all assume it's been rerouted to the right side.  For those that aren't familiar with how this all works, if you suffer brain damage, especially at an early age, things can reroute to the other side.  So in Owen's case, we believe the right side of his brain is taking care of most things he needs to function daily.  Through many of the other tests there were able to see that much his gross and fine motor skills are all on the right side.  This is good, because if they go in and remove part of the left side of his brain, we know that these things won't be affected so he will come out of the surgery as the same Owen he went in as MINUS the seizures and need for daily medications!  So right now the one thing we are unsure of is his speech and the doctors as well as Jamie and I would never move ahead with this surgery not knowing whether or not his speech would be affected.  So now Owen has to undergo yet another test which I am already dreading.  This test will basically in a sense put the left side of his brain to sleep so only the right side is functioning and they can then test him on his speech to see how he functions using solely the right side of his brain.  This is done via medicine given through a catheter/IV so no, this will not be fun.  :(  So this was my conversation I had as I walked the halls to the radiation/oncology department at the hospital for my radiation, brain surgery and another crappy test for my sweet Owen.  

My radiation went well.  I only have THREE more days left!!!!  Yippee!  I was so happy, Jamie got to come with me today too.  Not sure why, by my days are so much better when he is with me.  Probably because he's amazing.  :) He's with me all day tomorrow because Wednesdays are always his day with me while both boys are at school/daycare.  We are trying to plan a fun celebration for Friday after my last treatment.  Thinking we might head downtown for lunch at the Harbor House right on the lake.  Looking forward to celebrating with him, hard to believe 6 weeks is nearly done! 

In the afternoon today I called and made an appointment for all of us to go and talk with a child psychologist.  Well actually Jamie and I will go first and then Owen will go himself the following week.  Man, I feel bad for this woman.  I called and left her a message, I think I got about two sentences out, my name and phone number along with Owen's name and age before I had a total meltdown trying to explain what has been going on in our house.  Nothing like talking to voicemail bawling and saying "sorry give me a minute to compose myself" then composing myself and then right when I started talking I just broke down again.  I am sure she jotted own our info with a red pen in bold saying "CALL THEM IMMEDIATELY THEY NEED HELP ASAP".  She called me back later in the day and luckily I held it together while we talked, she sounded very nice.  I am extremely excited to meet with her.  Jamie and I need guidance on exactly how to talk to Owen about my health issues as well as his and Owen has been having lots of anxiety lately.  Hoping this will be good for all of us and I know it will be. 

Then onto dinner!  A big thank you to Heather for the delicious stuffed shells.  I was wearing a new shorter wig that I JUST got and as I was pulling the pan from the oven Jacob came running towards me and the hot oven at a million miles per hour. I instantly reacted to pull the pan out super quick and slam the door shut.  Somehow as I reached in I must have leaned my head too close to oven because instantly I could smell something burnt.  Of course, it was my new wig!  Seriously, can I catch a break?!  It's just a small portion but the hair is all crimped and burnt.  I am trying to salvage it by cutting out the burnt hair but I can still feel and see it.  Just my luck.

So that was our day.  Never a dull moment.  Hoping tomorrow is boring and uneventful!

Alright, I showered right before typing this and need to go and blow dry the small amount of hair I have remaining before I go to bed.  Here are two photos of the boys from yesterday.

Jacob enjoying the amazing weather we had yesterday!

It's hard for me to even get photos of Owen these days, he's a little tired of my camera.  :)


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