Wednesday, August 28, 2013

I want off the train!!!!!

     So all of you that follow this have heard me refer to our life as a series of peaks and valleys, traversing the mountains and making our way from the bottom to the top over and over again, well right now I feel as though we are riding a high speed train through those mountains and I WANT OFF!!!!!

     Things have been so crazy lately, the days seem to fly by like hours.  In fact as I logged in to write tonight I couldn't believe that my last post was 6 weeks ago!!  I feel like it was last week.  I guess I have a lot of catching up to do..........

Where to begin.....

     Life has thrown us some great news, some tough news and some wild curve balls that I'm not sure what category they fall in so I will leave it up to you to place them for me.  As I left off last time we had left the "decision makers" office and were awaiting his news on what type of procedure they thought would be best for Cam so two weeks passed and I reluctantly called the Dr.'s office.  The verdict......He would like us to be evaluated by 2 other Orthos before making any decisions.  While I very much appreciate the fact that they are being extremely thorough and making sure it's exactly right, I also feel like we are prolonging the inevitable and let's just get the ball rolling so I can get rid of the knot that has been resting in the bottom of my stomach for a month.  I have made the appointment to see the next 2 doctors for Sept 10th and we will see where that goes.

     Meanwhile we went on a tour of the local public school to see if Cam liked it and wanted to change schools in order to get more assistance.  It was GREAT!!!!!!!  Cam loved the school and made his decision as soon as we got in the car.  He was so excited we went to get school supplies right away.  Kevin and I both felt very comfortable with his decision as well.  It was hard to leave the family that we have come to know and love at St. D, but they all understood our choice.  With changing to public school Cam will have greater accesss to assistive devices as he needs them for things like writing, he will have an aid with him whenever he needs them as well as have PT and OT as needed right at the school.  The special education coordinator has been very helpful through the process of writing his 504, of which is still in the works ( what a process!).  He is riding the bus for the first time ever so that has been a BIG change for all of us.  I think moreso for Kevin and I, for the past 5 years we have walked him into class, hung up his coat and put away his backpack.  Now, he gets on the bus and off he goes.  His first week is coming to a close and he comes home everyday with a smile and talks about how much he likes it.  It helps that his best friend is in the same class :)

     At the beginning of August we went for our first MDA clinic at Lurie and the first person we saw was the "wheelchair guy" and boy was that an interesting way to start the day.  Here we are so excited that Cam has just decided to go to public school and ride the bus, only for him to look at us and ask with a puzzled look " Is he taking this chair?"  and we of course replied with a yes, that is the only chair he uses, why do you ask?  He continues to look over the chair front and back and proceeds to inform us that they will not let him on the bus because there are no transprotation hooks on his chair.....WHAT???!!!  School starts in 10 days.  So we ask how we go about getting said transportation hooks and he replies " you can't, they have to be drilled into the frame at the factory."  Hold the phone.......excuse me..... what was that.....are you being serious right now??!!  A true moment of panic has now set in and we are only 30 minutes into a very long day at clinic.  At this point we are crossing every finger and toe we have, not calling the bus company and hoping the dirver doesn't say anything when she picks him up, atleast not until we figure this out.  So on we go to the next doctor and the next and the next and if I was being honest, I'm not sure I remember anything after the wheelchair hook conversation.  So that was clinic.

     Then came vacation, oh glorious vacation.  Sunday afternoon rolls around, the camper is loaded and ready to go and we hit the road!  We had an amazing week in Missouri camping with Kevin's parents.  Lake of the Ozarks was so much more than any of us expected.  We took Cam into a cave that was completely handicap accessible, totally awesome experience!  We met some amazing people that were camping down by the water that just so happened to have extra kayaks and took us out everyday!  Cam loved riding in the front of the Kayak with our new friend and I happily paddled along side him while we took in all the sights from the water.  Brad, our new friend, was a wealth of knowledge about the area and everything in it. He taught Cam about all of the wildlife and plants while we paddled around.  We saw waterfalls, herons, king fishers, turkey vulchers and even a bald eagle.  It was probably one of the best family vacations yet!  

Then it was back to reality, and boy did it hit hard!

     We had given Cam a reward for doing so good with his boosts that he didn't have to bring his pump on vacation.  He had gained 10lbs when we saw the dietician at clinic. YAY!!   Shortly before we left for vacation he seemed to be having a little trouble in the mornings with his stomach being upset so we adjusted the volume and the rate trying to fix the problem and to no avail.  When we returned from vacation we started back up and same thing, his stomach would be upset when he got out of bed.  The first day of school we attributed it to nerves, so we tried again the next night and same thing.  This contiued for 2 more nights and finally we said this is crazy, we need to call and find out what to do.  All the nutrion he's getting at night is coming back up in the morning and he's not able to eat breakfast!  I spoke with the dietician this week and she advised us to stop the feeds and come in for a weight check in 2 weeks to see if he can maintain without the g-tube feeds now that we got his weight up.  Cam was pretty excited at the thought of no more g-tube feeds so keep your fingers crossed that he maintains weight or its back to the drawing board.  

     This past weekend we attended our first MDA Harley Davidson ride.  They surprised Cam with a sidecar!!!!  He was so excited, we had no idea that he was going to get to go on the ride in a sidecar.  The whole day was amazing.  The HOG chapter is full of amazing people who not only donated their money, but their time away from their families to spend a day raising awareness and money for families like us.  We owe a huge thank you to Andrew who was kind enough to bring his 1971 third generation BMW out for Cam to ride in.  It was truly a once in a lifetime experience for Cam and a heartwarming experience for us.  


     Tomorrow the respiratory therapist will be coming to teach us all how to use Cam's new cough assist machine.  For now they want him to use it a few times everyday until we go back to the pulmonologist for follow up in 2 weeks.  Hopefully he will only be using it when he is feeling congested, but it seems like maybe they want him using it daily, again I was only half there at this point at clinic.  

     In the meantime I received some very disappointing news at work and am still trying to convince myself it's for the best and that there's a reason it happened, or didn't in this case. I don't know, I want to give up and turn my back on the company that I have invested so much time and energy into, but at the end of the day I know there are people there that rely on me to be there and be their leader and I can' t turn my back on them.  My job isn't always ideal for family life, but for the most part it makes me happy, I love what I do and to me that means the world.   So at this moment I cannot change what my company has decided to do, I cannot right the wrongs of the people in it, I can only control what I do and that's to continue doing what I love and take the rest in stride.

And to think we've only been back from vacation for 10 days!!

      I am ususally always a glass half full kind of person, but sometimes it is hard to see the positive side when you feel like every time you get up, you get knocked back down.  I have had a few days lately where I just wonder who I pissed off upstairs to deserve such a hard path, why can't things be just a little easier.  Then I wonder, would I be bored if they were easier, is someone appealing to my need for constant challenge, is this what my competitive nature when I was young brought on?  I don't know, I am not sure that anyone knows why we are dealt the cards we are.  I guess all I can do is continue to push myself through becuase at the end of the day, there are a lot of people relying on my strength, love and positivity to get them through.   

But it wouldn't hurt if they would slow the train down so I could enjoy the scenery!