A large dose of reality

Saying that the last five days have been hard would be an understatement, a huge understatement!  We were all prepared for surgery, like the ones in the past, but we weren't prepared for what followed.  

    I will admit, the anxiety preceding this surgery was greater than any other because we knew the recovery period was going to be longer and harder than any of the others.  Leading up to the surgery there were a lot of sleepless nights, knots in the stomach, cries in the car and a whole range of other things.  But what followed the surgery has been far and away the tallest mountain peak we have attempted to climb.  I feel like we are climbing Mt Everest and just when we think we are reaching the peak, flag in hand, the clouds move in and we are forced to descend and start over.  

Cam finally resting peacefully after getting the pain under control.

Cam received over 50 get well cards from the kids at both schools, he clearly has no shortage of friends.

The firefighters bring Cam home :)

 

Cam thought he was ready to get back to his old habits, unfortunately it only lasted 10 minutes before the pain and dizziness kicked in.  Seeing Declan brightened his day, even if only for a moment.

    As Cam came out of surgery we were informed that they were unable to do the spinal block, which would have kept Cam's legs numb for 6-10 hours after and allowed him to be comfortable for what would be the worst pain immediately following surgery.  Instead when he came out the pain was terrible and they gave him 1 dose of toradol and 2 doses of morphine within the first 30 minutes of him waking up.  All was fine until all of the meds and the general anesthesia wore off all at the same time and within minutes we were way behind controlling the pain!  This turned into the longest, hardest 2 hours of our lives.  There is nothing worse than witnessing your child in pain and not being able to take it away.  I have never seen Cam in so much pain before, he would look us in the eye and say " help me mommy, help me daddy!"  "do something" " take my pain for me please mommy"  I didn't know what to do or say.  The nurses were in and out, on the phone with the doctors, desperately trying to figure out what to do.  Meanwhile Cam laid on the bed screaming and crying like I'd never seen.  After what felt like an eternity they finally gave him enough valium and morphine to knock him out.  After this episode the pain management team came in and hooked Cam up to a PCA (patient controlled analgesic) and he could administer a small dose of dilaudid every 8 minutes.  This along with a large dose of valium and hyacet every 4 hours seemed to keep the pain under control.  We ended up staying a second night in the hospital for pain control.  By Thursday afternoon they removed the pca and started him on Roxicet, which is stronger than the hyacet.  At this point, I am missing my Cam.  He is not himself, does not remember things, can't talk and just wants to sleep.  Friday comes around and it's time to head home.  The amazing firefighters from Palos picked Cam up in their ambulance and drove him home.  We had numerous offers to help get him home and we are grateful for all of them.  

     Since coming home we have seen very few moments of "Cam" which is the hardest part.  His contagious smile has been wiped away, his witty personality and amazing sense of humor are gone, the light in his eyes that touches your soul is dark and he is in a constant state of pain, uncomfortableness, sadness and regret.  We are trying our best to get him off the strong pain medication, but cannot seem to find a balance of comfort and medication.  We go from tears of pain to completely sedated and sleeping.  The entire process is taking a toll on everyone mentally and physically.  Cam's body cannot handle the downtime for much longer before we end up in a place where no amount of rehabilitation will bring him back.  All of this will be for not if we don't start making some progress.  

     His spirits are low, lower than I have ever seen them.  Tonight he had a very tough conversation with Kevin and my mom while I was in the kitchen trying to take a breather and recover from the hours of crying Cam had been doing over pain, frustration and sadness.  Cam has always been the kid that told us he was OK just how he was and never seemed to care that he couldn't play sports or run like other kids.  I think we always knew deep down that somewhere there was a part of him that cared, well there is!  Tonight as he was working through his pain and frustration he discussed his regret about doing the surgery, wishing he could go back because it wasn't worth it, he let loose.  He told them that he just wants to be like other kids, he wants to play sports, he wants to feel the grass between his toes as he runs across the yard just once, he wants to walk on the beach and feel the sand between his toes.  He said he wants to be a daddy one day, but never can because you have to walk to be a daddy.  He doesn't want to be broken anymore..............

     I am not sure if he will remember that he told us all of this, but there is a part of me that is happy he got to let it out and a part of me that wishes we never had to hear it!  Every time I think about it it brings tears to my eyes and my heart breaks all over again.  The last 5 days have been unimaginable.  I think if any of us knew that it would be like this we would have made a different decision, but I just keep going back to "everything happens for a reason."  In this moment I can't tell you what that reason is, my thinking is fogged by sadness, heartache, frustration and anger.  I know that we will come together as a family and work through this, but the road is rough right now.  I only hope that we turn a corner, the clouds recede and Cam can begin an amazing road to recovery very, very soon.  I hope that he is not disappointed with the results and that he can have the chance to feel his feet beneath him again even if it's for a moment.  

     The thoughts, prayers, love and support are what keep us going, so keep them coming because we have to keep going.     

Surgery is right around the corner!

Well, October 9th is not too far off and with the days passing like hours it will be here before we know it!  Last I left off we were going for an evaluation at RIC to see if there were any other options left besides surgery and the answer was a resounding NO!  They brought in some equipment for Cam to try to see if he could tolerate standing with his contractures and he was in too much pain to even last for a few minutes.  Basically we all came to the conclusion that if he wanted to stand again, surgery was our only hope, so October 9th here we come!  

 At this point, we are all ready and just want it to be over, the anxiety seems to build more and more everyday as we wait.  Cam is ready, in fact as we were waiting for the bus on Monday he said " why can't my surgery just be on Monday so we can get it over with!"  I agree with him 100%, I just want Wednesday to come and go as quickly as possible.  He seems to be dealing with it very well.  He has had a lot of questions for me and seems very open about it, which is a huge step for Cam.  He even told me that he has told almost all of his friends at school that he will be having the surgery and returning to school with casts on for a few weeks.  Somehow the fact that Cam is OK with everything makes it just a little easier for us.  

Basically the plan is this......

Surgery October 9th, typically they keep us just one night until the pain can be managed with prescription meds that we can give at home.  From there Cam will wear straight leg casts for about 3 weeks.  (He is really not looking forward to that part).  On October 29th we head back downtown to get his casts off and immediately check in to RIC for 2-3 weeks of inpatient rehabilitation.  Cameron will see PT and OT for approximately 3 hours a day in order to try and rebuild the strength he lost during his downtime.  Our goal is to get Cam to a point where he is comfortable in a stander, which we are hoping should be in by the time we get home.  ( http://www.leckey.com/products/mygo-stander/ )  Cameron has set his mind to stand on his own and wants to try his best to walk again!  He seems very determined to make this worthwhile so we are behind him 110%.  I hope that the results live up to his expectations and that his pain is not too great.  

As for Kev and I we are hanging in there.  I think we are doing as good as any parent in this position would be doing.  We have our sleepless nights, our days where we are feeling down, our days where the anxiety seems to be all you can focus on, our days where we feel hopeful of the results, and our moments where we are so proud of Cam that nothing else matters.  We have remained open with each other about our feelings and emotions and tried to be understanding when the other is having a rough day, but let me tell you, it's not easy.  We have our moments where we both fall off the wagon at the same time and we look at each other and aren't sure who is going to take the first step to help the other one back on, but somehow we pull through.  

We are blessed to have an amazing support system of family and friends that are always there for us in moments like this, and for that I thank all of you, relationships like those are priceless.  I have a great deal of confidence in the team of doctors that will be with Cam on this journey and know that they too only want the best for him.  The next 6 weeks will bring a series of physical, mental and emotional challenges for all of us, but I know that together we are so strong that nothing can stop us from pulling through. 

Feeling inspired

So after a long day the Lurie last Tuesday we left feeling confused and unsure of the plan and Cam was angry at the world!  We first saw a new Orthopaedic Surgeon and really liked her.  She completed a full exam on Cam, then brought her partner in to verify her findings and they both agreed that Cam would definitely benefit from surgery.  Cam put on his headphones as she began to explain the process to us.  

They would go in from behind his knee and release his hamstring as well as his knee capsule (this contains the tendons that seem to be a root source of his problem).  He would stay in the hospital for just 1 night assuming they can get the pain under control and he doesn't have any complications.  From here they would put him in straight leg casts that he would have to wear for approx 3 weeks.  During this time he would be recovering at home and able to return to school using a wheelchair that was properly equipped to hold his legs up.  After 3 weeks we would return to RIC (rehabilitation institute of Chicago) where they would remove the casts and begin 2 weeks of intensive inpatient therapy in order to help Cam regain his strength and ensure the tendons are properly stretched.  Kevin and I were expecting this information and we felt good leaving the room.  The doctor seemed confident based on Cam's other success from soft tissue surgeries that he would recover great and see good results.  As far as the results go we could expect to see Cam use a stander and possibly stand on his own for a few minutes at a time.  Walking seems to be a long shot, but I am not ruling it out!  When he underwent his hip release in 2007 they told us he would never walk again and he walked for almost 5 years after that.  I don't want to set myself up for disappointment, but if I was being honest there is a little piece of me that gets butterflies in my stomach when I think of him being able to take just 1 step. :)

From there we headed to the rehab doctor to discuss equipment.........As if my house wasn't full enough!  She performed a rather quick exam and began talking about how she felt that if our only goal was to get him in a stander that we don't need surgery???!!!!!  What???!!!  We just left feeling confident about our plan and this lady just threw us all for a loop!  My stomach began to churn, I was on the verge of tears and feeling overwhelmed once again.  I took a deep breath, gathered my thoughts and began to try to listen to her with an open mind, even though I wanted to scream obscenities at her!  She then begins to tell us that they may be able to make a stander work based on his level of contracture (inability to straighten his leg) but that we would need to go see the PT at RIC in order to determine if this was an option.  All in all I am not sure that she was much help since by the time we left we were utterly confused and referred to a PT for everything we thought we were seeing her for.  

In the following days we had a conversation or two with Cam and he just simply responds by crying and being mad.  He is clearly upset at the idea of surgery, and who can blame him, and says he is perfectly happy using his wheelchair and does not want to walk or stand again.  The doctors keep telling us that his drive to stand and walk again will play a huge part in his recovery and at this point we are unsure if he has that drive.  We kind of tabled the conversations to let things settle in a little and meanwhile scheduled an appt at RIC for an evaluation to see what our options might be without surgery as well as scheduled the surgery for October 9th in the the event that the PT does not have a better solution.  Cam does not know it is scheduled yet as we do not want to upset him any more until we know for sure we are going forward with it. 

Now here comes the "feeling inspired" part.......

Today Cam and I were in the car headed to lunch and I told him he didn't have to go to school on Thursday and he responded with disappointment "another doctor appointment?"  I went on to explain that we were seeing the PT to see if he could use a modified stander and use it without doing surgery and he seemed to perk up a bit.  Then we were sitting at lunch and he brought up the subject again so I asked if he had given any more thought to our conversation the other night about wanting to stand and walk again and here was his response

      "I did, I want to walk again.  Even if it means surgery I think it would be worth it.  I will be crabby when I have to wear the casts, but it will be worth it" 

I wasn't sure what to say as I really wanted to break down in tears of joy as we sat at Target eating pizza.  I actually had to say it back to him to clarify that I heard him right and he confirmed that he was ready to do it.   ABSOLUTELY AMAZING!!!!  I don't know how he does it, but somewhere in his mind he has once again forced the positive thoughts to the front and made a decision that I'm not sure most adults could make.  He has accepted the pain and hard work as a pay off for ability to see the world from 51" tall and the potential to take a step, even if its just one.  Still to this moment 4 hours later, I want to cry.  I have tears in my eyes and my hands are shaking as I write this.  I am so proud of him and hope that I can harness even 1 ounce of his strength through this process.  

So barring any major changes to the plan we will be headed to Lurie for Surgery October 9th and be praying that the pain and hard work pays off for him.  

Love this kid!

 

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!!!