Tuesday, January 14, 2014

We made it through day one!

Thank you to EVERYONE that has been thinking of us today!  The day actually went pretty well.  We stopped at Einstein bagel on our way in, Owen and I used to go there at least twice a week while I could still drive to get a cinnamon sugar bagel with peanut butter that we would share so we stopped through there on our way in this morning and treated ourselves to a yummy bagel! 

As soon as we pulled up to the hospital, Owen immediately asked if he was getting shots today.  We told him that yes he would be getting one shot (his IV) and that we were actually having a slumber party and that we had a whole box of fun gifts and toys that a bunch of his friends gave him and he was all smiles and excited.  The large box in the wheel chair is all the generous gifts and busy bags we have received!  A HUGE thank you to everyone that filled this box for us!

Yes, he insisted on wearing his Hulk costume OVER his Spider Man pjs. 
 As the elevator door opened a woman got out and looked at us and said "are you the family from the news last night" and we replied yes and she had the biggest warmest smile and wished us luck. Made us all smile and as that elevator started up towards the 8th floor it was just the reminder we needed that we had lots of people rooting for us! 

We got all checked into our room and then took Owen down the hall to get him all set up.  He was SO brave.  It's not fun having the long term leads put on your head.  I think there are like 30 of them and they first have to measure and mark your head with a crayon/pencil type thing that requires enough pressure to make it uncomfortable.  Then they have to wash each mark with a cold, grainy soap that doesn't feel good.  Then they have to glue each individual lead to your head, press down hard, apply ice cold glue and then press this little dryer in each one that blows cold air.  He tried so hard to smile the whole time and be brave but about half way through his eyes were welling with tears and he tried to fight them back and by the last few he was sobbing.  Then they had to get his IV in, that was NOT his favorite part at all.  
Watching Despicable Me 2 on dad's phone while the leads went on.

Then we got back to our room and he was back to smiling.  He opened some gifts and busy bags and had a great time playing his new stuff.  Special thanks to Beth and Greg, I think we have watched that Hulk movie like 4 times already.  :)  It's his favorite!
His other favorite past time is messing around with the bed.  He puts his head and feet all the way up so he gets folded in the crease and tells us he is turning himself into a taco.  I am sure we will have this bed broke by the end of the day tomorrow.  :)  Put it on our tab.

I had a bit of a rough day.  I think I realized today just how much we have on our plates right now.  I was very weak and shakey and spent much of the day curled in a ball on a chair while Jamie really did an amazing job with Owen.  At 3pm I made the LONG walk from Children's to the Froedert Cancer Clinic for my first appointment this week.  Had a few thoughts along the way of "really, my son is back at Children's right now going through so much and I am walking over to the Cancer Clinic for a brain tumor, is this REALLY happening?" Think that might have been my low point of the day well that and when I dropped my whole box of Milk Duds on the floor in our hospital room and I just started to cry, yes I was THAT girl today.  Jamie kindly picked them up off the floor, threw them out and handed me another box.  :)   I actually took an hour long nap in our room this afternoon which seemed to help perk me up a bit. I have only been sleeping like 12-3am most nights and it's really catching up with me.  It killed me to be sitting in a chair and not being Owen's #1 go to person but I just didn't have the strength this afternoon and Daddy was doing an amazing job.  I know tomorrow is going to be another long day for me, I have appointments from 10:30 -2:30 and we will be talking lots about my treatment which is just draining in itself so hoping I can keep my energy and spirits up and return back to Owen's room as Supermom because that is what he needs.

They are actually weaning Owen's medicine pretty quickly.  He was REALLY off tonight, thought for sure he might have had a seizure already today but he ended up falling asleep for the night and is peacefully resting now.  My high of the day was definitely snuggling him to bed.  Even with all the weird noises, the screaming kid in the room next door and the bright lights pouring in through the wall of glass in our room, our bedtime routine was the same.  He laid on his left side and I rubbed his butt and he quietly closed his eyes and feel right asleep.  I just laid there thinking about how lucky I am to have him in my life, how much he has taught me and how his attitude and bravery today inspired me for all my stuff tomorrow.

His neurologist stopped by around 5pm to say hi.  He let us know they have already seen lots of activity on Owen's EEG.  Makes me happy and sad at the same time.  Happy that we are capturing stuff that hopefully we can do something about BUT sad to hear that all the little quirks we see at home and wonder about like weird stares, little twitches, slowed speech are actually stemming from stuff going on in his brain.  It just really breaks my heart.  Every night around 6:30 or 7 he really seems to struggle, his speech slows, he has a hard time controlling his body, his eyes are slow to track and we never knew if he was just tired, if it was the meds or what and now we know, there is truly stuff going on in his brain.  I can't even imagine what a fog his life must feel like and yet he doesn't even really know how good he COULD feel, this is ALL he knows. 

The doctor said everything he was seeing was coming from the left side of his brain which is good news.  Bad news is that they want to record a few seizures.  I thought it would be one seizure and they would get him back on his meds and we would be out of here.  But they actually want to get 3 or 4 seizures.  This means, he will have a seizure and feel like total crap and then just keep feeling like crap and have more seizures and then it will be a day or two more here to get him back adjusted to his medicine.  This is going to take a huge toll on his little body.  He already tonight is so out of it and having a hard time even knowing what to do with his body.  These days will be a lot of just trying to keep him in bed and keep him safe.  Agh, my heart just breaks for him.  We just have to keep reminding ourselves that this will be worth it in the long run if we are able to help him get rid of this epilepsy all together. 

My baby boy asleep for the night.  

Thanks again for all the love and support!
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  1. You are such an inspiration!! You and Owen are 2 of the strongest people I know. Fight hard momma...you both GIT THIS!!

  2. You are such an inspiration!! You and Owen are 2 of the strongest people I know. Fight hard momma...you both GIT THIS!!


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