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!    

The appointement with the "decision maker" aka the Ortho

     So last week we had our first appointment with our new Orthopaedic surgeon at Lurie Childrens.  I call any Orthos the decision makers because every other doctor we see tosses around options and ideas, but the Ortho brings those ideas and thoughts to action.  Most of the time as we prepare for our appointments I am fairly relaxed, except when we are seeing the Ortho.  My stomach was in knots for 2 days and sleep was not restful because we kind of knew what was coming............that dreaded word..........SURGERY!!!  When we last saw the neuro, she tossed around the idea that Cam seemed to have enough muscle in his legs to support his small, yet very tall, body but since he could not straighten his legs all the way he is too far off balance to stand.  So once again, I knew that it would fall into the hands of the Ortho who would make the final call to do surgery or not.  I spent a few days researching it and found lots of useful information, but I still was not happy with the idea of Cam having a 2nd surgery this year :(  Some where in me I was secretly hoping he would have a different answer, even though deep down I knew what was to come.

     Muscular Dystrophy causes key muscles and tendons to contract and therefore they eventually become shorter and shorter until you can no longer use them properly.  The first place this usually happens is in your heels, Cam has already had both of his heel cords released ( a surgery where they cut the tendon, then cast him until they grow back at the proper length) , then it can move to the hips where there are 4 separate tendons.  Cam had these done too, back in 2007 he had what they call a bilateral hip release and we spent 4 weeks at Hope Childrens in inpatient rehab.  It was a quite painful surgery because the tendons in the hips tend to go pretty deep and he had all 4 on each side released!  Then it heads off to the knees, hamstrings and can even affect the elbows.   So that brings us to 2013 and Cam's inability to walk, transition and even stand on his own anymore.  This has happened so fast, literally over the last 6 months he has lost all ambulation on his own and now doctors, and parents, start to worry about so many other things.  Once a person becomes non-ambulatory they are at risk for a number of problems with muscle atrophy of your major organs, scoliosis, heart trouble, pulmonary issues and a laundry list of other things that quite frankly I can't bring myself to think about.  So here's where we are.........

     Cam's doctor has suggested that he have a hamstring lengthening ( http://www.livestrong.com/article/141053-what-is-hamstring-lengthening/ ) done in combination with a knee release.  Now comes the part that was a little overwhelming, thankfully the doctor will be consulting another Ortho and they will make the decision about the best way not us!  There are 3 different methods they use to achieve the same result, a fully straightened leg.  One option is similar to what they did on his hips where they do in with an incision on both sides of each knee and cut the tendon so it can grow back longer, this is called a tenotomy.  ( http://www.surgeryencyclopedia.com/St-Wr/Tenotomy.html )  The second option sounds quite interesting to me, the will make a small incision above each knee cap and place 2 screws in the upper growth plate of the leg in order to stop the top portion from lengthening while the bottom half continues to grow. ( http://eight-plate.com/treatment_overview.php ).  The third option seems less than desirable if you were to ask me, they would make the incision below the knee cap, break the bone away from the knee joint and reattach it at an angle that would create a straight line with his upper leg so as he grows it would grow at that same angle.  Honestly, I'm not fond of any of them, but I am trusting of his team of doctors and have hope that he could stand on his own again, even if for a few minutes at a time.  We will be talking with the Ortho in about 2 weeks to discuss the best option as he and his partner see it and I guess, get surgery scheduled for sometime this fall. 

     Another big decision lies on the horizon that is approaching rapidly.........what to do about school???  So Cam has attended private school for the last 5 years and they have been wonderful!  It is a great school with amazing teachers, parents and students and they have made so many modifications to help fit Cam's needs.  Unfortunately now with his inability to stand, he can no longer use the restroom without assistance and this creates quite a problem.  Many suggestions and offers of help have been made by his current school and Cam is not so sure about how they will work so we are debating the idea of switching him to public school.  In the public school system they would provide him with a personal aid when he needs one throughout the day to assist with things.  Oddly enough Cam seems somewhat excited to visit the school and check it out, which is not normal!  It is a big decision for all of us because as parents we feel a great deal of comfort where he is at and are very nervous about sending him anywhere else.  We have not come to any conclusions yet, but need to get going on it as school is coming fast!

     At this point in time, I have fully accepted that Cam will never walk down the hallway at school again, or even across the room, but I am very thankful that he was blessed with the opportunity to experience those things.  We were given a great opportunity in 2007 to do the hip release and at that time they said Cam would never walk again so stranger things have happened and he could prove everyone wrong again.  Those of you who know Cam's story know that 8 weeks after surgery he walked again!  After such great success it's very hard not to have the highest of hopes for this time around, but I fear that I cannot handle the disappointment if his success is not as dramatic this time.  For now I will only hold hope that he can simply stand on his own again and feel his feet beneath him touching the ground and supporting his body. 

     Each morning when you swing your feet over the side of your bed and feel them hit the ground, don't take it for granted.  Be happy that you were blessed enough to survive one more day and one more night in this crazy world and you can stand on your own two feet and carry yourself wherever you want them to take you!

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.

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!!!
 

Finding Balance

As we continue on our journey of life with Cam, we once again discover that finding balance is key.  What I don't understand is why doesn't it ever get any easier to find that balance? Why as humans do we find ourselves consumed by our worst traits when times get hard? Why do we feel the need to hit near bottom before we realize the need for help and balance?  I guess we call that "human nature", but boy does it make for some bumps in the road!!!!

Every time we have faced a decline in Cam's health or a major change in his medical needs, everything seems to fall out of balance.  I tend to deal with these situations by bringing out my controlling side, I have to know everything about everything, I have to make all the appointments, I have to know everything good, bad and ugly about what is happening, I research things to no end, I talk about it to everybody and their brother.  Meanwhile, Kevin deals with it in denial until it's right in our face, he internalizes everything and releases some of it in time when he can handle it, he tries to interrupt my control, to no avail, and then lets me go on my manic control spree which ends in all sorts of crazy feelings.  Although a lot of those feelings are not justified, they hang in the bounds until we reach the bottom and are strong enough to look inside and decide to make a change.  This my friends is exactly the pattern of the last few weeks since we have returned home from the hospital.  We came home with new responsibilities, which in turn changes the dynamic of all the relationships in the house.  This morning I woke up and decided that today was the day to climb out the hole and get our balance back, take responsibility for my actions and find happiness, so off to yoga I went.  I left feeling like a new person, ready to take responsibility for my portion of the unjust feelings as well as talk through the ones I didn't feel responsible for.  What I did realize though, for probably the thousandth time in my life, I cannot expect anyone to take care of me better than I take care of myself, and that is where I went wrong.  I was expecting people around me to do things that I had never even asked them to do, like they were mind readers, and then allowed myself to be disappointed when they didn't do it!!  Seriously!  One of the most important things this roller coaster has taught me over the years that I can only be the best mom, wife, boss, and friend if I put myself and my happiness first.  I have discovered that while life may give you more than you think you can handle, peoples actions and words can affect you in the moment, and sometimes you feel like everything is against you, only you are in control of the outcomes and your happiness.  How you respond to the obstacles, challenges, actions, and words, combined with your ability to talk things out and most importantly the ability to take responsibility for your own actions and feelings is what truly finding balance is all about.  

Tonight as I sit on the couch and look over at the two greatest gifts in my life I feel balanced.  It feels like a weight has been lifted off my shoulders and am looking to tomorrow, not looking back at yesterday. 

I cannot imagine what this roller coaster ride must feel like for a 10 year old, but it however it feels it doesn't seem to stop Cam from finding his happiness.  His birthday party was amazing!!!  He had friends and family over, the Game Truck came to the house and everyone had a great time.  As the parents came in to drop off and pick up their kids, Kevin and I had an opportunity to speak with some of them and were amazed at the amount of compliments they gave Cam.  They all raved about him being the happiest kid in the hallways, always offering a smile and a good morning or good afternoon, telling us how their kids come home talking about how great Cam is.......it truly was a humbling experience.  After the kids came in from the truck and had cake they were headed downstairs.  I asked Cam if he needed help and he replied "no, I got it Mom" as he slid off his chair and began to butt scooch, I witnessed an act of kindness that could only come from a child.  His friend sat down next to him and scooched all the way across the floor and down the stairs with him.  I wanted so badly to take a picture to capture the moment, but all I could do was stare in amazement and hold back the tears.  Cam is surrounded by a support group larger than I ever imagined and we owe a big "THANK YOU!" to everyone who reads his blog, helps him at school, offers thoughts and prayers, raises children that are so kind, helpful, and warm hearted. 

This week Cam was asked to be the manager of the boys' volleyball team at his school, and much to my surprise he said YES!! I am so happy that he will be part of a team and that his friends found a way to include him in something that he otherwise would not have had he opportunity to experience.

  We are blessed to live such a life and feel such love and support!

 

Pulmonologist........check!

Well after another loooonnngg day at Lurie Childrens we have another clean bill of health.  Cam and I spent the majority of our day downtown doing a pulmonary function test and meeting his new doctor.  Along the way we found ways to entertain ourselves with the nose plugs they use :)  The test was long, but painless and the doctor was incredibly nice and informative.  Cameron's test results showed some very strong numbers as far as lung capacity and ability to pull air in.  He is able to use 87% of his lung capacity and breath in at 88% which is great!  The only number that was low was his ability to push the air back out, which came in at 47%.  She said this is completely normal in MD patients around his age because that uses the smaller voluntary muscles which are usually some of the first affected by the disease.  She has a very proactive approach, which I loved, and suggested that sometime before next winter we come in and learn how to use a cough assist device (http://www.healthcare.philips.com/main/homehealth/respiratory_care/coughassist/default.wpd) and get one for the house.  She said she could set us up with one now, but it was not urgent as we are coming out of cold and flu season.  They recommend for us to have one on hand as Cam gets older because as the disease attacks his muscles, coughing will get more difficult and a basic cold could very easily take a turn for the worse if he cannot produce a productive cough.  I appreciated her proactive look at things and as soon as we are fully adjusted to the tube we will be adding one of these devices to our current collection of medical supplies.  She talked of a lot of things that could potentially become issues in the future, but once again cannot give us any firm prognosis as Cam still does not have an exact diagnosis.  She spoke very highly of the new neurologist and clinic that we will be attending in the coming months, which was reassuring.  Changing doctors and clinics is always scary and filled with challenges so it is always nice to hear positive things before you go.  She told me that the neurologist was at the forefront of genetic testing and had many connections in the MD world, which is exactly what we are looking for.  Genetic testing has come so far since we last tried to find a diagnosis that we are hopeful we can find the answers we are looking for!

For now we are breathing another sigh of relief and looking forward to Cam's birthday and summer being right around the corner............

Which brings me to tell you about a conversation I had with him the other night, while doing Legos, that weighs heavy on my heart.  Last summer we invested in a dune buggy, an ATV and a trailer so we could go off-roading as a family.  Cam loves being outside and riding the four wheeler, but cannot ride as a passenger at many of the off road parks so we bought a 2 seat dune buggy!!  Even though it seemed to break down every time we took it out, Cam loved it.  We would come back after a run full of mud laughing so hard we couldn't talk.  Kevin and I got to talking about plans for this summer and started thinking about how Cam's body has changed and started to question whether or not his body could take to rough ride anymore, or if he would even want to go anymore.  Ever since he his g-tube placement his mindset of what he can and cannot do anymore has changed drastically.  He no longer wants to be in band, which he was so good at, because it's too hard to breath with that much force now.  He will no longer pull himself up into chairs or out of chairs in fear of hurting his button .  While I understand why he is afraid and no longer wants to do these things it breaks my heart to see.  I casually brought up the dune buggy conversation while we were working ever so diligently on his lego project and at first he said he was looking forward to it.  So I said great and we continued on.  A few short minutes later, after I watched his wheels turning ferociously, he looked up and said "actually I don't think I can do it anymore".  I inquired as to why the change of heart and he briefly explained that where the seat belts are they will hurt his button and he just doesn't think he can handle it.  At that very moment my heart broke once again, I wanted to crawl under the table and cry like a baby.  But I didn't.........I gathered my thoughts and tried to continue the conversation, which became a one way conversation very quickly!  I could see the hurt in his eyes every time I looked at him and he immediately shut down.  This is pretty typical when we talk about things of this magnitude.  He told me he didn't want to talk about it anymore, but would not tell me why.  I knew why, I just wanted him to open up and let it out but I guess he is not ready.  I am hoping one day he will talk with us, or someone else, about his feelings and dealing with his body changing but until then, all we can do is offer our love and support and let him know we are here when he's ready.  Later that night he told me that he liked our idea of selling the dune buggy and getting a little travel trailer to go camping :)  so if you are looking for us this summer, we will be camping!

Friendship

So what is the true meaning of "friendship"? 

Cam can tell you................

It's the one person who wants to be like you because it makes you feel good!  Even if it means doing something you don't do everyday.

It is someone who does arts and crafts instead of the swing set because you can do it together!

 It's someone who shares their birthday party with you because you are only a week apart!

It's someone who goes to the beach and builds sandcastles and holds you up because it's hard to stand in the sand!

It's someone who lets your cousin hang with you and be silly, even if she's a girl!

It's someone who helps you up when you are down!

It's someone who will sit next to you when that's the only thing you feel like doing.


Cam is so lucky to have a friend that has been there through everything and no matter what, still stands by his side.  They have a special bond that I hope everyone has the opportunity to experience in their life. 

Cam had a great appointment this week with the cardiologist.  We were there for what seemed like forever, they did an EKG, an echocardiogram and then the Dr. came in.  She said Cam's heart was in great shape, was the right size and she didn't need to see us for 2 years!!!!  The best appointment we've had for a long time.  We are hoping the rest of our appointments continue to go this good so we can continue enjoying the peak of life :)