What is normal?

So I know it has been a over a month since I last posted and let me tell you it feels like yesterday!  The days seem to fly by like hours and the weeks like days.  Our schedule is very hectic between day rehabilitation, hydrotherapy and holiday hours at work.  Most days I wouldn't know if I was coming or going if it weren't for the 6 calendars we have synced on our phones.  We are very blessed to have so many great people in our lives as well that help us manage the day to day schedule.......neighbors, friends, family and coworkers that have stepped up and offered to help in any way possible.   

On with my title........What is normal???

So as I was walking upstairs tonight carrying Cam's new bath/shower chair I realized that this is my reality, my normal.  My normal has become a gambit of medical equipment that is suppose to make our lives better and easier and for the most part, this is true.  Until you take into account that we live in a split level home and don't have a vehicle that is wheelchair accessible, that doesn't bode well for this type of lifestyle but it's our reality, our NORMAL.  Today I spent the day with Cam, lifting his now 70lb titanium wheelchair in and out of the back of our van, as we did the last of our Christmas shopping then came home and put him into his stander for an hour and then carried his chair and him into the shower and never did I once think about how much simpler life would be without all of the equipment until Cam told me he was ready to shower and rather than say OK go for it, I had to say "give me 5 minutes to get it ready"............that my friends is the difference between your normal and ours.  One is not better or worse, harder or easier than the other, just different.  I schlepped his extremely heavy chair in and out of the van without question or hesitation 15 times today, meanwhile watched others frustrated that their child was not getting in the car fast enough or not walking fast enough and could only think to myself be happy that he can get himself in the car and be patient while he figures it out.  Be happy that he can walk down the aisle of Target and you don't have to strain your back carrying him or his chair, but I guess you can't expect people to understand that until they've experienced something other than that.  Everyone gets comfortable with what they feel is "normal" and that is exactly where I am.  I am comfortable with where we are.

Cam in his stander

His new bath chair

Cam is happy and works so hard every minute of every day trying ot reach his ultimate goal of standing independently and still holds onto the hope that he will take a step, just one is all he wants.  He has never once through the entire process siad he can't, he won't or he doesn't want to.  I'll be honest, there are days when I lay in bed when the alarm goes off and say I don't want to get up, but that never happens with Cam.  He is always ready to go to therapy and works hard during every session.  He has made some incredible strides in the right direction.  He can now walk for 15 minutes on the treadmill, in the harness, he can complete 2 laps at the rehab facility in the gait trainer and can tolerate his stander for an hour.  The tenative discharge date for his day rehab is Jan 17th and from there he will begin an outpatient PT program and continue to work on strengthening and stretching at home. 

I have sat down many times to try and write thank you notes or make cards for those of you who have supported us and Cam through all of this and can never get it done.  I have so much to say to all of you, but can never seem to put it into words that fit in a card.  In fact, I have so much to say that I draw a blank every time I try and write them out.  The emotions of all of your support and generosity are completely overwhelming and I am unsure how to say Thank You in a way that is big enough to represent how we feel.  

This time of year especially makes me appreciate every moment  and everyone in our lives.  I have a  very dear friend who is going through the holidays for the first time after losing her daughter, another friend whose mother only has a short amount of time with us, the anniversary of my grandmother's passing and numerous people who are overcoming their own struggles everyday, it's pretty hard to not appreciate everything we have and are blessed with each and every day when you put it into perspective. 

I often have people ask me "how do you do it?"  Well, let me put it this way.........what choice do I have?  This is the hand I have been dealt and I wake up everyday just like you and face the days challenges head on........I just choose to do it with a smile on my face and a great sense of humor :)

Happy Holidays and hug the ones close to tight and love them with every bit of your heart every minute of every day.....no one is promised tomorrow so enjoy today!

Discharging tomorrow!!!!

Well another leg of our journey is coming to an end tomorrow.  Exactly 12 hours from now we will pack our bags and head home to begin the next leg of Cameron's rehabilitation and new lease on life.  Throughout our stay here we have taken some amazing strides in the right direction, met some amazing people and learned so much about Cam's true strength and determination.  We cannot thank the therapists enough for what they have given Cam and us over the last 19 days!  They truly are an amazing and very talented group of individuals that come to work everyday in hopes to make someones life just a little better, and let me tell you they did just that.  Cameron gave them all he had each and every session.  He never told them he couldn't do something or wasn't willing to try, he never questioned an idea or concept they had before testing it out and he did everything they asked with 110% and usually ended with a smile on his face.  Each therapist had a little something different to offer and appealed to Cameron in a unique way.  We are leaving here with a new found sense of Cam's independence and not only are we excited about this, Cameron is confident in what he can do, he has never been so open and willing to participate in daily routines such as getting dressed.  Now he has discovered that if his clothes are in reach he can get himself dressed head to toe before getting out of bed!!!!  It's things like that that really enrich the lives of someone with a disability.  Think about this for a moment.......

What if you had to ask someone for help for everything everyday?  What if you had to wait for someone to come help you when you wanted to get dressed?  What if every time you had to use the washroom you had to ask for help and then have someone stand there and watch?

This is what a normal day for someone with a disability is like if no one gives them the confidence or tools to do it themselves.  I can only hope that Cam never feels like a burden because I know that if I was in his shoes I certainly would!  I hate even asking for help when I really, really need it ( I know that is so hard for some of you to believe) let alone asking 5, 10, or sometimes 20 or 30 times a day for help.  What they have given him is the ability to do things on his own so that he doesn't have to ask for help for a lot of things that he did a month ago.   It's an amazing feeling for me and I can only imagine how great it must feel for him!

From here we are heading home to try to get some, and I use that work cautiously, normalcy back to our lives.  Cam will be going to the RIC day rehabilitation program 3 days a week as well as coming back here on Tuesdays for hydrotherapy.  On the days he has therapy he is going to try and go to school in the afternoon if he is not too tired and then he will also be going full days on some Tuesdays and every Thursday.  Things for Kevin and I are about to become very hectic.  As most of you know my work schedule this time of year is less than desirable, but hey it's my favorite time of year at work so I'll take it, and then trying to squeeze in all of the therapies, homework and daily exercise routines it will be insane!  I am so glad that he is transferring to the day rehab program though instead of straight to outpatient therapy.  I think he needs the intensity for his body to keep moving in the right direction and I think it motivates him to keep working hard and pushing, rather than doing things an hour here, an hour there and driving him all over the world everyday.  This way I only have to drive him to half of the world almost everyday :)  

The other part of the story after being here is the kids that we have met......WOW!  I've seen and met some amazingly courageous kids, some lazy and ungrateful kids who don't see how lucky they are to be here.  Some of the kids here have the same zest for life that Cam does and don't let anything get in there way.  Everyday you pass by them in the hallway and they smile from ear to ear as you pass and it's the best medicine!  Cam has staked his claim on a few of them along the way with his warm heart and endearing smile.  He has gone out of his way numerous times to make sure that the shy kid down the hall knows he cares, given a "lift up" to our roommate who is often lonely and in desperate need of attention to always giving the girl on the floor that happens to have a thing for him a hug whenever she wants (she's quite the little hugger).  We have watched other kids progress in their therapies, but everyone seems awe struck at the amount of progress Cam has made in 19 days.  Even as we were finishing our last session today the OT said "I remember the first day I met you and you were in so much pain Mom was the only one who could move you to today you don't need any help to do anything!"  He went from not being able to tolerate any weight or movement on his legs and ankles to riding 2 laps unassisted on the bike, standing in the stander for 50 minutes, getting dresssed head to toe, walking 2 laps in the gait trainer, transferring from chair to table/bed/toilet using his new slide board, moving from laying to sitting quickly and efficiently and even standing with minimal assistance using the parallel bars.  Wow, I got goose bumps all over again just writing all of that out, and I'm sure I'm forgetting things!  

I can't say that I expected this experience to be so moving.  I am happy for everything he accomplished, ecstatic to be going home to my own bed, sad to be leaving a great group of people and therapists, excited and sad to be going back to work ( I love what I do, but I have really enjoyed my time with Cam) and nervous for what the next leg of the journey will bring.  I can only hope that we find another set of amazing therapists at the satellite location, which I'm sure we will, and that Cam continues to find joy in learning new ways of doing things for himself and that his confidence grows more and more each day.  I am still holding on to the hope that he can reach his ultimate goal of taking a step on his own, I feel like we are leaving here set up for success and that's an amazing feeling.

This is Cam riding the bike completely unassisted this morning for 2 laps!  

Emotional to say the least

If anyone ever told me how emotional and hard going through the rehabilitation process was going to be and I laughed and said it will be no big deal, I'm sorry...........I should've listened!

Don't get me wrong, Cam is making great progress and this place is amazing.  Cam is regaining his strength that he had lost since the surgery very quickly and is able to do some things on his own again like go to a sitting position from laying down and rolling over.  He is not as quick and swift at these as he used to be, but we are happy to see him doing them again.  He is also learning new techniques and "tricks of the trade" to help with daily living things like putting on his own shoes.  Although the independence is great for Cam and I know these things will make his life so much better in the long run, it's very hard for mom and dad to sit back and watch him struggle, it would be so much easier to just do it for him.  That my friends is where the emotional part comes in, well amongst other things but we will start there.............

As you watch Cam in therapy you go through a crazy range of emotions over a short period of time, his sessions are usually 30-60 minutes at a time.  In the beginning you are totally excited to find out what he will be doing to overwhelmed by what he can do, most of the time to tears, to heart broken watching him work so hard to do what we consider the simplest of tasks to finally trying to cover them all up and focus on what's important.....celebrating the wins with Cam.  Wow, I know right!  And we do this 3-6 times a day everyday, no wonder I'm exhausted by the time we lay down at night.  Some of the hardest things seem like they would be the easiest, like for example, Cam is realizing that he can do things for himself like cut up his own food.  So there him and I sat eating breakfast as usual and I reach for Cam's plate to spread the butter and cut up his pancake and he says "no mom, I got this"  At first I was like awesome, good for you!  Then he worked and worked and worked to get two bite size pieces cut up and with every stroke of the knife the knot in my stomach grew larger and larger.  I basically had to sit on my hands to stop myself from reaching over and saying "let me help you"  I knew in that moment that I couldn't do that, nor would I do that!  Cam was expressing a need to be independent, the therapists have given him so much confidence that he wants to do things for him self.  He looks up at me, after getting those two bites cut with a light in his eye and smiles, AMAZING!  He continued cutting and eating, cutting and eating all through breakfast and as we were walking back to the elevator he says, "wasn't that cool mom, I did it myself!"  All I could do in that moment was to hold back the tears that were brewing over 1,000 emotions and celebrate with him.  People getting on the elevator probably thought we were a little nuts because we were excited, high five-ing, you name it we did it!  It was in this moment that I realized it did not matter how small his accomplishments were, it was my job to be excited about it.  We lay in bed at night and he says "mom" about 200 times between the hours of 8am and 8pm and most of the time he needs a position adjustment in the middle of the night, but other times it's to show me what he can do.  I can't begin to tell the the number of times he says "mom, look I can move my toe" "mom, look I can bend my knee" and each and every time I take a deep breath and celebrate with him!  It is hard, sometimes I'm exhausted and will have just sat down and the thought of getting up to watch him wiggle his toe is down right miserable, but I keep telling myself it's not about me, do it for him.  Then there are the times when the things he does are down right incredible, like using the gait trainer and walking.  Holy Crap!  Let me tell you that was so emotional I was nauseous and I would get up out of my seat any day anytime to watch him experience that feeling again and again.

Cam at his first hydrotherapy

Today really made me aware of exactly what it was that I was feeling as I sat opposite of Kevin while Cam did his afternoon PT session.  I watched as his facial expressions showed every emotion I was feeling.  I even watched as the therapist, who Cam has only worked with in the pool so far, got a little emotional as well.  He had Cam do a few things and then offered up a couple suggestions for Cam to try, of which he did and very successfully.  Then at the end he asked Cam to show him how he could go from laying to standing and asked him if it was going to amaze him.  Cam responded with "yeah, check this out, I'll show you what I can do!"  So we have excitement right, then Cam works and works and works to get to sitting, using a technique that he came up with on his own, and BAM he was sitting.  I looked up and saw the therapists face turn red and I'm pretty sure he may have swallowed down a few tears.  He looked at Cam and said "now that's why I love what I do, that was amazing" 

Cam using the gait trainer for the first time!

Very happy after his first hydrotherapy session

When Kev left tonight he apologized for getting emotional, to which I replied, don't be sorry for being emotional it's a very emotional process.  Just be sure that Cam doesn't see the look of wanting to help so badly that you look sad or disappointed that he is working so hard when it used to be easy.  Ugh, when I read his message I wished I had a closet to go to and have a good cry, and maybe a little scream because I too had realized today how emotional this was and, sometimes reality sucks.  But instead I lay here in the dark in my not so comfy chair/bed and write. (probably the healthier of the two options)

 It's a rough rocky road right now and we need monster suspension when we are with Cam to be sure that we are continuously supporting his wants and needs to be independent as hard as that may be.  I only hope that Cam can fulfill whatever wants and needs he has and be happy being him.  

So I will leave you with this..............

Never, ever take for granted what you consider the simple things in life.  The small simple things are the ones we should hold near and dear to our heart and feel blessed each and every day that we can do them. What you may think is easy, may be near impossible for someone else and you never know who that someone else might be so you should always be prepared to celebrate.  The only thing I can be sure of, for that person who sees it as impossible, it feels like a million bucks to have someone show you a way and to do it just once!

Cam laying flat on a table before surgery

Cam laying flat after surgery, his knees are almost completely straight!

Turning point

And the trek through the mountains continues..........

Let's see, since last I wrote we have experienced the full gamut of emotions.  We went from completely ecstatic getting the casts off to extreme disappointment at the amount of pain he had afterwards then we went onto anger/sadness about checking into rehab.  From there we continued with the sadness after we checked in and were less than overwhelmed with our temporary "home" and I think in that was a bit of nerves about the days to come, then onto the evaluations we go.  Thursday morning rolls around rather quickly after a short night on sleep and he is already worked up about PT coming in first thing in the morning.  He had a lot of pain in his ankles but that didn't stop PT from doing their thing.  Within a matter of 20 minutes she had him sitting up on his own and then onto his feet (with her help of course).  It was at that moment that I knew it didn't matter what the room looked like or how comfortable (or not) my bed was but that we were in the best place possible for Cam to have a shot at a successful rehabilitation!  Cam was still a bit unsure at this point if he was "all in" on this place and the plan for rehab.  They convinced him to participate in Trick-or-Treating, which he was not at all excited about, but he faked it good :)  He saw lots of therapists and kids in a variety of different places in the rehab process and I think it helped to open his eyes, and mine, a bit to what we had going for us.  Cam has done this before and has a good shot at walking again, some kids are not so fortunate but they were all so happy and it warmed my heart to see how caring and dedicated all of the therapists were.  No matter how much "work" it was they ensured that every single kid got to experience the same thing and hit every floor with bags and buckets in hand.  Simply amazing!

 

On our way to RIC, not so happy.

Sitting up for the first time since surgery

Cam feeling his weight on his feet for the first time in a long time!

 

 

 

 

His amazing Halloween costume

Cam raising himself up on the tilting table

We had yet another rough night on sleep, they have been giving him some melatonin which seems to help him fall asleep but the knee immobilizers are still pretty cumbersome and uncomfortable so he is awake a lot.  This morning we woke up and got the day started bright and early with PT at 8:30am.  It was off to the tilting table to get some weight on those legs, ankles and feet.  The therapist was quick to tell me to go get my coffee and relax so she could see how much she could get out of him without mom around :(  Much to my surprise when I got off the elevator he was almost all the way up and chatting away with her so I stood back and watch the rest of the session from a distance.  Cam had no idea I was behind him and on more than one occasion I could feel my eyes welling up with tears and had to pull myself together.  You have no idea what it feels like to see your child go from so much pain and struggle to finally be in a standing position carrying on a conversation with a smile on his face.  I didn't care if he was strapped to a table that was helping him or not.  All I saw was my baby boy on his own two feet standing tall.  He worked hard all hour long and then came back to the room to relax before another session.  

We had new inpatient orientation followed by what was to be the most amazing moment of rehab we've ever experienced.  This is where the light bulb turned on for Cam and his whole attitude and outlook was forever changed.  His goals are set high and determined to leave here doing WAY more without assistance than ever before!  So here's how it went........

He had a new therapist named V(going to only go by letters for privacy) who was a guy, brownie points with Cam right off the bat.  Then he started asking Cam about comic books and super heroes, now he is in!  I sent them on their way so I could get cleaned up for the day as the morning was quite busy.  Shortly after I get out of the shower there is a knock and the door and I opened it only to find Cam standing up in a wheeled stander, and not just any wheeled stander.  This was the same exact stander we tried to fit him for before we decided on surgery and Cam could not even get close to being able to stand up in it..........and now he is in it comfortably, standing tall, legs straight AND wheeling himself down the hallway!!!!!!!!  Now the tears are welling up for sure, but I 'm trying not to embarrass him totally so I suck it up and just smile on through.  I quickly sent them on their way so I could gather myself, inside I was jumping up and down like a little kid on Christmas.  I was so excited I forgot to get a picture or video until he was almost around the corner, but I got a little video that I will attach so everyone can enjoy the moment with me.  When they returned from their session I had my Cam back, he was happy, excited, positive, determined and sitting up in his chair with the legs down and a big ol' smile on his face!!!!!  I haven't felt this good in a very long time.  

Later on in the day the Psychologist came in to do her thing and he talked openly and was very positive about everything she asked.  He was very chatty and answered all of her questions thoroughly, he even volunteered information and stories (now that's Cam!)  He then had OT which at first he wasn't looking forward to because he was a bit sore from all the PT work that he did, but once he got going it was great.  He sat up in a chair, crossed his feet, raised his legs and even took off and put on his own shoes.  I know these things may seem small to some of you that read this, but in our world that we have lived for the last year these things are huge!  Cam had really taken a nosedive in being able to do things for himself and to watch him push his way through some of the pain to reach the end result all on his own was incredible.  They then took off in his chair and went off to work out his arms and he once again returned smiling from ear to ear.  He now says that he really really likes PT and OT and that this place is pretty awesome.  Tonight we had dinner together in the dining room, took a nice long hot shower and now he is relaxing and getting ready for bed.  He is very tired tonight but says he feels good about what he accomplished today, as do I.  

Cam has set his goals high and I have no doubts that he will do everything in his power to achieve them.  His determination and spirit are back and I LOVE IT!!!!!  This weekend we will get to go out on pass a little bit and get him some fresh air and good food. 

I stuck my flag in the ground at the top of Mt. Everest today, I intend to stay there with him as long as I possibly can and watch it wave in the wind.  We are so blessed to have an amazing support system of family, friends and even friends of friends and I hope that you too will continue to stand with us because this is one heck of a journey!

SMILE :)

Your hardest times often lead to the greatest moments of your life. Keep the faith. It will all be worth it in the end.

 

Casts are off!!!

Well, the day that Cam has been waiting for has finally arrived.  THE CASTS WERE COMING OFF!!!!  3 weeks have passed and we headed downtown for what Cam thought was going to be the best day ever.  Kevin and I had tried to prepare him that he would be sore and that things were not going to feel outstanding just because he wasn't wearing casts, but regardless, he was excited.  10:15am the guy from the cast room calls us back and immediately begins cutting.  Cam is laughing, especially when he gets to his feet because it tickles so much.  It is so nice to see him laugh and smile while we are at the doctors office, normally he is mad and afraid.  He cuts and cuts and cuts then pulls them apart and rips them off!! Cam is smiling from ear to ear until he realizes how much it hurts to move any part of his leg, ankle or foot.  Now the disappointment starts to set in, it's written all over his face.  Then the cotton comes off and we discover big, and I mean big, bruises and blisters on his knee caps from where the casts were pressing :(  No wonder he kept complaining that his knees had been "shot off and were in lava".  Now they fit him for knee immobilizers, which I was dreading, and it turns out that he likes them because they support his legs so they don't move.  Finally the surgeon comes in to see the results and remove the stitches.  She was very happy with how straight his legs were and how well the incisions had healed.  Now the nurse starts taking out his stitches and I start going down, and by down I mean lightheaded, nauseous, sweating, on the verge of passing out!  LOL  Not sure why, but she made me feel better telling me that most parents experience the same thing.  So while Cam laid there all brave and relaxed while they removed all the stitches I sat in the chair white as a ghost drinking my grape juice :)  

Once we finished we headed for home and Cam couldn't wait to take a nice hot shower.  Him and I fumbled our way in and out of the shower/bath with only a few minor pains and mishaps.  Let's just say that was not meant to be a one man job, an extra set of arms would've gone a long ways.  He was ready to relax in bed and watch videos on his computer for a bit and settle in.  Meanwhile I found myself sitting in the kitchen wishing he had his casts back on.  Over the last 3 weeks we had a pretty good system in place,  the pain was nearly gone and we were moving in the right direction, now I feel like we've gone backwards.  In my rational mind I know that the step we took today was in the right direction, but come on now, who is rational at this point.......certainly not me!  We worked our way through the day, had a couple very special visitors and Cam even got a bag of Halloween cards from the kids at St. Damian!  

Tomorrow begins a whole new adventure.....we check into rehab!  Tomorrow we will check in around lunchtime and spend the afternoon getting settled into our new temporary home.  Thursday morning will be the "real deal", we meet with the therapist for his evaluation.  I have been trying to prepare Cam for this by moving and stretching him as much as he will tolerate letting him know that the therapist will be moving him every which way come Thursday.  I hope that things go better than my gut is predicting, but if  I was being honest, I am scared to death of what's to come in the next week.  I am so afraid of seeing Cam in pain that I already have a knot in my stomach and we haven't even started :/  I am trying to keep that under wraps and stay positive for Cam so he can go in with an open mind, but inside I am screaming obscenities!  

We will keep you posted as rehab progresses and hopefully be able to post some pics of his progress.  For now I want to thank all of you again for your kindness, generosity and all of your thoughts and prayers.  I know in my heart of hearts we are making strides in the right direction and we will see great success.  Cam is one determined little boy that I know will put everything he has into making this worthwhile.  When I think of it that way it makes me smile from the inside out! :)

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.