Tuesday, April 1, 2014

Tomorrow is our first hurdle of the week.

We have had a couple normal days around here.  Yesterday the weather was AMAZING!!  60 degrees felt like HEAVEN!  Made me really excited at the thought of spring and summer.  Everything is so much better when the sun is shining and you are outside in the fresh air.  The boys had a blast yesterday playing the yard.  Owen has a ride on John Deere tractor and Gator.  They are his favorite things in the WHOLE world and he rides them NON stop in the summer.  Well Jamie dug them out of the garage for the boys to ride on, it was going well until Jacob mastered how to drive the Gator on his own.  Owen is NOT thrilled that Jacob can do it himself.  A lot of screaming and fighting happened.  It's going to be a LONG summer if they don't learn to share.  There are TWO tractors and TWO kids, I am not sure what the problem is.  Owen was fine with Jacob just sitting on them or being his passenger but as soon as Jacob learned how to push the peddle to make it move forward it was an all out war.  Boys!  Today the weather was back to COLD, COLD, COLD and WINDY!  
Tomorrow we go in for Owen's WADA test.  In the past for all Owen's medical testing we haven't really told him much about it, just kind of showed up and he has always been brave and done fine.  Well now that he is older, that plan just doesn't work anymore so we were told to tell him the night before about what would be happening.  So tonight we sat him down and discussed with him that tomorrow morning he would be going to the hospital so that the doctors could take a look at his brain to try and see if they can figure out a way to stop his seizures.  Thanks to all his amazing therapists from school, they made an amazing sticker chart that listed everything that would happen tomorrow so we were able to walk him through the sticker chart tonight.

We could definitely tell that he understood things . He got a little awkward and didn't want to talk too much about it but we were able to tell him that this stay would be MUCH shorter than his last stay.  Tomorrow we will only be there for a few hours and then he gets to come home.  I think he really understood when I was telling him about the EEG, he HATED the EEG in January but that was one that was put on for an extended period of time so the process of putting it on takes forever and it's really sticky glue and they use this really cold air to dry the glue, tomorrow the leads will just be on for a few hours so it's a much different process.  We let him pick out one DVD to bring with and then Jamie left to run to Walgreens to pick up some medicine for him (we have to go like every other day because Owen's insurance is not working AGAIN! for those that read my blog celebrating that after 8 days of continous phone calls I finally got his pharmacy coverage back up and running... it was short lived, two days later it was done again and has been down ever since, the insurance company says it's a known problem but they don't know how to fix it)  ANYWAYS... when Jamie left Owen kind of teared up and told me he didn't want to go to the doctors tomorrow.  I assured him it would be really short and that mommy and daddy would be there.  I told him it's okay to be scared, sometimes I am scared too but we still have to go and be brave and then we come right back home.  So fingers crossed this goes well!  It will be very strange to see how he functions with the entire left side of his brain put to sleep.  I hope this all isn't too scary for him.  He is finally back to his old self.  His meds are working, he is talking a ton, jumping like he has never jumped before and just acting like the old Owen and now we are throwing another curve ball at him.  It really breaks my heart but I know we need to do this and I know he will be brave.   We will leave for the hospital around 6:15 tomorrow morning and will hopefully be home before noon.  
Big thanks to my sister Kim who came and picked up Jacob so he could sleep at their house.  Jacob didn't seem too sad to be leaving us, the second Kim and Emma walked in Jacob was trying to run out the door to get in her car.  :) 

Then on Thursday I have an 11 am appointment with my doctor to discuss my treatment plan and the report we got from Best Doctors regarding my tumor.  I am really not looking forward to that.  Those doctors appointments are DRAINING!  You hear stuff you need to hear but you just don't want to hear it, much less talk about it.  I wish I could just ignore it and make it disappear but obviously this is not an option.  Hopefully we are close to figuring out which chemo I will start and can discuss when I will start it.  As much as I am not looking forward to chemo, I do want to be as aggressive as we can with this crazy thing in my head.  I am just finally starting to get some energy back which has been nice, I am still napping most days but find myself having more energy and patience with the kids in the evenings which feels good.  Kind of getting back to my old self so I am trying to enjoy that before I start chemo and go back to being tired. 

Then on Friday we have Owen's big IEP meeting.  I can't believe he will be in kindergarten next year, that just seems CRAZY to me.  I hope I am not an emotional basket case while I am there.  I am already crying right now just typing this.  We will be talking about transitioning him to the new school and all new therapists.  The thought of leaving his current team just breaks my heart.  They have had such a HUGE roll in Owen's life and MY life these last two years.  Their passion for what they do is something I have never seen before.  I am just sobbing right now knowing they won't be there next year.  These women have gone above and beyond for Owen every single day for the past two years.  They get him to work so hard, he has achieved so many goals, they keep everything fun and exciting for him and have helped mold him into the amazing 5 year old he is today!  I know he is going to thrive in school and it's no doubt because of the amazing head start he was given by Pat, Emily, Cathy and Erika.  Man, I hope I just got all the crying out now because I sure don't want to look like this on Friday!  

So that's the rest of the week for us.  Please keep Owen in your thoughts and prayers tomorrow that his testing goes well and that he handles it all well and that this test gives us clear results to help us make the decision regarding surgery for his epilepsy.  
Thank you to everyone that has been following my blog.  The support from everyone is amazing and helps us keep chugging along!


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