Thursday, June 20, 2013

Things that should be so fun.....

     So we set out today with a plan, we were going to get supplies for our new fire pit, get groceries and then head to the pool to sign up for our season pass and get our swim on!  Sounds great right?  Well the first few things went OK, Cam and I even stopped at Five Guys for a hot dog and some seriously amazing fries.  Then it was off to the pool, Cam was so excited about getting a pass so we could go whenever he wanted, swimming is one of his favorite things to do!  I can not even imagine how amazing it must feel to be able to walk without struggle, jump up and down and feel your legs beneath you holding you up.  He just smiles from ear to ear when he's in the water and bobs up and down.  He can hold his breath longer than anyone I know too!!  So we arrive at the pool, of which we had never been to, and I could see Cam's disappointment before we even parked the car.  The pool was much smaller than he had hoped and left a lot to be desired.  I put on a smile and said "let's go check it out, we're here and I want to swim!"  We went in and just paid the daily rate so we could make sure we liked it before we committed.  We get all ready to go.  Goggles....check, swim shirt.....check, into the pool we go.  Much to our surprise it was FREEZING!!!!  Cam's worst nightmare.  He is so thin that if the water is not warm, he cannot be even get in for a minute without shivering and his lips turning blue.  He tried twice to get in, but just couldn't stay in even up to his knees for longer than a minute.  So we packed it up and headed out :(  No pool pass for us this year.  
Ever since he was a baby he has loved the water!
Grammy and Grampy always cranked up the heater for Cam!

As long as he is warm, he is smiling!

Then I had a thought as we were getting in the car, I cancelled my Lifetime membership, but it is good through 7/1 so we could go swim there.  Smile back on :)  We arrive at lifetime, get all ready to go and we head into the pool.  The water is quite a bit warmer so Cam begins to bob up and down, stand on 1 leg, jump and bounce and attempt to tread water.....all the things he can't do out of the water.  He is so happy in the water, it melts my heart to watch the smile on his face and his excitement when he says "look at my feet Mom, I can bounce from one foot to the other!"  It's amazing how one moment can make you realize all of the simple things in life we take for granted each and every day.  Then he was getting tired so I scooped him up and sat him on the edge, before I knew it they were blowing the whistle at me telling me he couldn't sit there.  We headed to the steps so he could rest for a minute and again, before he could get a moment to rest they were blowing their whistle again!  He can't sit there either!!  Seriously, you can't sit on the edge to take a break!  Cam said he was ready to go back in, but when he did his legs were just too tired so he asked to go back to our chairs.  From the moment they blew the whistle I saw his frustration and disappointment and he was done, ready to go home.  How can something so simple such as wanting to go swimming be so hard.  Some days I don't know how he does it, I was broken today and I can only imagine how he must feel.  We came home and he sat with his computer and smiled and laughed all afternoon.  I guess that's his solace and I'm happy he has that, I only wish that he didn't have to face so much adversity every day. 

We ended our day on a positive note with steak on the grill, Cam's request, Jack Frost ice cream and he saw his teacher, which he was ecstatic about!  

Still to this moment he is sitting next to me, watching you tube videos and laughing out loud.  I guess his laughter is my solace because it brings a smile to my face and my heart skips a beat every time I hear him laugh.

Thursday, June 13, 2013

Wow........where to start????

Well, sorry for the looooonnnnggggg delay between posts.  Life has thrown us a few less than desirable curve balls over the past few months and I would like to say I took them in stride, but I didn't!!  :)  I have not been feeling very inspirational lately and never wanted Cameron's blog or the chronicles of our daily life to become part of peoples "pity party" or a "woe is me" type story so I just refused to post until I felt like I was ready.  I have often found myself comparing my misfortune to other peoples and tying to make myself feel better about the things in my life because their life is harder or worse than mine.  What I have realized is that this type of thought process gets you nowhere, you cannot find happiness or a positive outlook based on that fact that someone else has it worse than you.  As much as I want to believe that it will help, it hasn't worked so I'm giving it up and going for a new approach.  I have been asked a number of times when I was posting again, why haven't I posted etc and I have sat down multiple times over the last few months thinking the time was right and........nothing happened!

So, that being said here we go..........

Let's see last I posted we had just had a great couple of Dr visits, some really great test results and we found balance again as a family living with our new equipment.  Well, remember those curve balls I mentioned earlier, they came flying at full speed and I wasn't swinging.  Kevin went out for the first ATV ride with my dad and brother and proceeded to wipe out, break a few ribs and his collarbone.  Well, for the average family this is a minor setback.  A few missed days of work, a little less help around the house, but manageable.  In a household with a disabled child, this my friends is a MAJOR setback.  I immediately without hesitation fly back into complete and total manic control mode.  So much for balance, it didn't exist, it couldn't exist.  Kevin was in a lot of pain and I put on my nurses hat and got down to business.  I even had some sympathy, and for those of you that know me well, you can pick yourself up off the floor now :)  We pushed through the first couple of days with some unexpected pains and bumps in the road, but we were getting there.  10 days after the accident I was scheduled to leave for a girls trip to Vegas so Kevin's sister came in to help with Cam so I could go and take in a few days of relaxation so I didn't fall completely off the cliff, and I can't thank her enough.  It was a much needed break, had a great time with lots of laughs and came home with a severely broken pinky toe courtesy of the lifeguard chair. :(  Through all of this Cam has kept going about his daily routine and adjusted well to all of the chaos that has now become our life.  We are blessed that he is so compassionate and understanding that he just rolled with punches.  Everyday he had to go to before school, which he really dislikes, he went to after school everyday without complaint until I could get there, he played alone and patiently waited for me to get things taken care of before asking me to do anything.  I know the days got long for him and some days he felt like a burden, but he always said he understood and was OK.  My parents were a great help through all of this, picking Cam up and taking him to dinner, helping with the yard work, helping with laundry and housecleaning, without them we would be lost!  We pushed through the broken bones and things were getting somewhat back to what we consider normal by mid May so I was finding my balance and we were pushing up the hill towards the peak just in time for summer.

Mother's day was fantastic, we had brunch with my family, Cam made me some amazing gifts and Kevin made me dinner.  Life does not get much better than that!

As we approach the end of the school year Cam is really looking forward to the last day of school and very ready for summer break to start.  The last day of school arrives and I always volunteer at the end of year picnic (field day) so I can help Cam get around and be involved in all of the activities.  Every year we have a great time outside doing games and crafts, inside we dance to the DJ and Cam and I are limbo experts.  This year was very different.  We started in the assembly and things were great, Matt Wilhelm was doing bike tricks and talking about bullying.  then it was time for outdoor play and things began to go downhill.  Cam started doing a craft and eventually a few of the girls joined in, meanwhile all of the boys were wrapped up in their game of football and could not be interrupted.  Cam had taken his manual chair and couldn't get out on the grass very well so he sat on the sidelines and watched.  I stood by him and watched him get quieter and quieter by the minute.  I asked him if he wanted to leave or do something and he said he wanted to stay for the DJ.  Finally after a very long hour and a half of outdoor play it was time for the DJ!!!  Off we went excited and ready to go, until we entered the lunchroom.  All of the kids ran around dancing and singing and left Cam in the dust.  While I understand it's not their intention, nor do they mean any malice, it still breaks my heart to watch.  Cam's eyes began to well up with tears and fought real hard to keep them back, but I knew they were there.  I looked at him and he said "we can go Mom, I'm ready."  I was speechless, wheeled him out, gathered his stuff and off we went.  The car ride home was quiet, but we had a lot to look forward to.  I asked him several times if he was OK and he without hesitation responded "Yes Mom!" We were leaving that afternoon for our first camping trip, so I was ready to be home and start packing.  I was happy to have the distraction because my heart was breaking for him.  I have thought about that moment many times and wondered how many more times will he have to feel that way, even though I'm sure he hasn't given it a second thought.

In the midst of this we learned that a member of our "fire fighter family" as well as a good friend to Cam, had chosen to take his own life.  Try breaking that news to your 10 year old, NOT FUN!  On Sunday evening we met with some of our MDA family to pay our respects and say goodbye.  Cam was very quiet and kept to himself all day on Sunday, it was very hard to see him clearly affected by the situation, yet refused to admit it was bothering him.  I think sometimes his strength and ability to deal with challenges gets the best of him and he refuses to admit when things are too hard.  We arrived at the service and were introduced to his mom who had some very kind words for Cam and he began to cry.  Finally he is showing the pain and man was it heart wrenching for anyone around to see this sweet little boy cry for his friend and not understand why it happened.  It was a quiet car ride home and as we entered the house Kevin picked Cam up, gave him a big hug and Cam began to sob.  We talked about things over dinner and spent the rest of the evening having family night watching Cam's favorite movie.  All I could think was is the the end of the curve balls?  Man I hope so!!!

On Tuesday of this last week Cam and I headed downtown for a slough of tests and appointments at the crack of dawn.  We arrived at the hospital and got started.  They took and X-ray of every bone in Cam's body, kinda cool, then did a dexa scan to measure his bone density, then we headed to the lab where they drew an enormous amount of blood.  At 9am we were done and had a break until we had to be back for another appointment at 1pm.  Cam and I walked what felt like a billion blocks to a breakfast place that he likes then contemplated what to do for the next 3 hours.  He decided he wanted to ride the bus to the zoo, so off we went.  We missed the first bus so we waited for the next one and on we went and let me tell you, it was so easy with his wheelchair!!  We wandered around the zoo for awhile and headed back.  We met with the dietician and Cam had gained almost 3 pounds!!!  It was incredible to hear that he weighed in at almost 43 pounds, the most he has ever weighed!!!!!!!!  She was very happy with his progress, but wanted us to push harder to get his boost to the 480ml per day goal, right now we were only up to 300ml per day so we have a long ways to go.  She was also not very happy that Cam had started skipping breakfast because he is full form his morning boost.  Recently Cam has been having problems with his nighttime boost giving him reflux and he has not been able to finish the full 150ml so she offered us a new plan.  We would start hooking Cam up to boost at bedtime and he could stay hooked up to the pump all night while he sleeps.  he could take the full boost amount over 9 hours and then not have to take it during the day at all.  Cam agreed to try it and SUCCESS!!!  The first night Cam took all 300ml while he slept, woke up saying he didn't even feel it and was hungry for breakfast.  We will slowly start increasing the volume over the next few weeks in hopes to reach our 480ml per day goal.

Now we are going to kick back, relax and enjoy every moment of summer we can.  Cam has a few appointments this summer with some new doctors so we will deal with anything they say as it comes, but for now we are smooth sailing and I will take it while I can get it!!!