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 πŸ™  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 πŸ™‚  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!!  πŸ™‚  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 πŸ™‚  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. πŸ™  Through all of this Cam has kept going about his daily routine and adjusted well to all of the chaos that has now become our life.  We are blessed that he is so compassionate and understanding that he just rolled with punches.  Everyday he had to go to before school, which he really dislikes, he went to after school everyday without complaint until I could get there, he played alone and patiently waited for me to get things taken care of before asking me to do anything.  I know the days got long for him and some days he felt like a burden, but he always said he understood and was OK.  My parents were a great help through all of this, picking Cam up and taking him to dinner, helping with the yard work, helping with laundry and housecleaning, without them we would be lost!  We pushed through the broken bones and things were getting somewhat back to what we consider normal by mid May so I was finding my balance and we were pushing up the hill towards the peak just in time for summer.

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

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

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

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

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

Finding Balance

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

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

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

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

Pulmonologist……..check!

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

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

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

Friendship

So what is the true meaning of “friendship”? 

Cam can tell you…………….

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

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

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

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

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

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

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

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

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

Cam shows MD who’s boss!

After a challenging start trying to get back to school and work, and a short night on sleep, Thursday morning came around rather quickly .  Cam did his boost then got ready to head to school to give it another shot.  Kevin took him in and off to the bathroom they went.  The plan was to have the school nurse go in and help him until he regained the strength to do it alone, but Cam, once again, showed his strength and determination and said he didn’t need any help.  Cam pulled his chair in the way that his Dad had practiced with him and up and over to the toilet he went and back to his chair!  Cam went to school both Wednesday and Thursday full days and did everything on his own.  I can’t put into words the feeling I had when I walked in Wednesday afternoon to see him smiling after a full day of school and telling me he did it on his own.  I think we all slept a little better that night πŸ™‚
The weeks ahead bring appointments with the cardiologist, pulmonologist, follow up with the surgeon and a new MDA clinic at Lurie Childrens where we will see a neurologist, orthopedic and slew of therapists. We will keep you updated with how they go, for now we hope and pray that they are just routine visits.  Most of the doctors are new to us as we change his medical care over to the team at the new hospital.  The appointments will be long and grueling, telling the story of Cam’s medical history for the last 9 years over and over again, but it is worth the agonizing to have Cam under the care of some of the best doctors in the world!  We are hoping with a new team in place we can push forward with some further genetic testing to come closer an exact diagnosis in order to aid in Cameron’s treatment.  With all of the advances that go on in the medical field on a daily basis we feel as though we owe it to Cam to provide him with the best medical care we can find. 

I feel as though we have hiked our way out of another valley, cleared the treeline and are climbing for the next peak, Cameron’s 10th birthday!!!  I can’t believe almost 10 years have gone by, seems like just yesterday I was watching him take his first steps.  I know we have a long, bumpy road ahead of us with many obstacles, but in this moment I find peace that we made it through. We will enjoy the peace and serenity while it lasts and know that on the other side of every valley is this moment where we can all smile, take a deep breath and make every moment of our lives count.  

Back to reality

Every day I wake up and look at this face, a face of bravery, happiness, determination, intelligence, creativity and love.  Most days I look up to him and wonder how he does it.  How does he wake up smiling everyday knowing the challenges he will face?  How does he wake up everyday determined to prove people wrong?  How does he wake up everyday ready to work 10 times harder than the rest of us to do everyday things?  How does he come up with the most creative ways to make things that are difficult for him easier?  How is he so BRAVE?  

This morning I woke up extra early so I could hook Cam up to boost before school.  I carry him to our bed, hook him up and he promptly falls back to sleep.  I continue getting ready all the while worrying about how the day will go.  I pack our lunches, make coffee and go back up to disconnect him and get dressed for school.  He comes downstairs with a smile on his face ready for his first day back.  I am smiling too, but totally freaking out inside!  I say goodbye and begin my commute to work.  The plan is for Kev to go in and make sure he can use the restroom, which is the most challenging part of his day because he has to transfer from his chair all by himself.  As I drive I am trying to talk myself down from the cliff and just keep reminding myself how excited Cam was to be going back to school and that is a blessing.  At 8:58 I get the call………….things did not go as planned.  Immediately my heart hurts for Cam, he must be so upset.  My mind is racing! What do we do now?????  What if he can’t ever do it again?  How will we make this work?  Will he have to change schools?  How will he handle this?  Then I get it together, I pull up this picture on my phone and think of all the things I listed in the beginning of this post.  Knowing that Cam will push through with all of our support and love I sucked it up, went to work and got caught up.  Meanwhile Kev and Cam headed home and began to relax themselves.  They started working on some ideas for making transitioning easier and came up with a great way to make things work.  We’ve practiced a few times tonight and Cam is ready to go back tomorrow and try again and I have no doubt that he will do it!

I spend a lot of time in the car on my commute to and from Indiana for work and use this time to gather my thoughts, cope with situations and reflect on the days past and put my energies in the days to come.  I have learned so much from Cam in the last 9, almost 10, years that I cannot begin to put it all in here, or into words for that matter.  I hope for those of you who don’t have the pleasure of knowing Cam as well as others that I can continue to share pieces of him so you too can get to know his strength and use it to push yourself through anything you encounter.  He has faced more challenges in 9 years than most people do in a lifetime, yet he still wakes up with a smile on his face ready for whatever the day brings! 

Smile πŸ™‚ 

Challenges often make us realize that we have more courage than we think and that one person CAN make a difference in the world … even if it’s the world of one other person.
β€” Chelle Thompson, Editor of Inspiration Line

1 week post-op

So here we are, 1 week post-op already!!!  I can’t believe that a week has gone by and Cam is headed back to school tomorrow and I am headed back to work.  All in all things have gone pretty easy since we came home, aside from the occasional moment when I want to throw that feeding pump across the room πŸ™‚  Cam has been feeling better and better everyday and is working hard on stretching and moving around in hopes to be back to normal sooner than later.  His body is tolerating the feeds and he seems to be eating pretty good too.  We have a lot of homework to catch up on and lots of thank you notes to write today before things swing into full gear tomorrow.  

School days will be interesting as Cam’s feeds (we call them boosts) of 120ml take about an hour to complete right now.  We are hoping to build up speed as we go, but for now that is as fast as his little body can handle without refluxing.  This means waking up extra early every morning so he can get an hour boost in as well as eat breakfast before school.  We tried to do one constant boost last night of 240ml in 1.5 hours because he did not eat much lunch or dinner but at 220ml he was refluxing.  

The site of his tube seems to be healing nicely and he doesn’t have much pain when we manipulate it to clean it or hook it up.  Carrying him is still a bit interesting as it pulls on the site if we pick him up by the underarms like we normally do so we have to carry him in a laying position.  With his long legs we often run into doors and walls and get a good laugh out of it!!

Today Cam is diligently working on his homework to try and get caught up after missing 8 days of school.  Afterwards we might go try and find some fun and get him out of the house a bit…….maybe a little Dave and Busters in our future πŸ™‚

Love, 
The Schwartzbergs

Feels good to be home!

It feels so good to be home and get a good nights sleep!!!

We were discharged yesterday afternoon about 3pm and headed home.  On our way out a volunteer from the family life center told us to stop by the Valentine’s Party downstairs before we left because they had really great gifts for the kids.  We ventured down to the 12th floor family life center at Lurie Childrens Hospital and met some amazing people from an organization called Holiday Heroes.  (http://www.holidayheroesfoundation.org/)  They gave Cam a box of valentines, a valentines card and a Best Buy gift card!!!  It was a great going home gift.  

We made it home and got settled in and Cam was feeling good.  His pain is under control and his appetite is increasing.  His best friend came over and played Xbox with him for a couple hours, which is the best kind of therapy for Cam!  Today we are going to start trying to get him moving around a bit again and work on some stretches so his muscles don’t atrophy too much.  He has lost quite a bit of strength over the last few months so we are hoping with proper nutrition and some therapy we can get some of it back. 
This morning he woke up after a great nights sleep and had a little breakfast and now we are getting ready to do our morning supplement.  Kev and I are learning as we go, but are doing pretty good with all of the new equipment we came home with!  I am very thankful for the internet to answer my questions as they come up πŸ™‚  Today Cam will be home taking it easy and is hoping his best friend will be over again to play video games and take his mind off things.  I will be out shopping for a cabinet to house all of the supplies that Walgreens seems to keep delivering EVERYDAY!
Lot of love,
Kev, Elisha and Cam 

Things are starting to look up!

After a rough start to the day, things got a little better.  We narrowly avoided a second run in with the catheter which changed Cam’s mood instantly!  He light up with a smile the instant he started to go, it was the best thing I’ve seen in the last 48 hours.  From there we continued increasing the pace of his tube feelings and he tolerated them well.  In the afternoon we got unhooked from the IV and took a cruise in his chair to check out the views of the city and lake from the hallway windows.  Cam said the fresh air felt good!  We stopped feeding through the tube about 2pm and he was able to eat a chicken tender, with ranch of course, and  said it felt good to eat again. We rested most of the afternoon, had some great visitors and Kev andI learned a lot. We learned a lot about the tube itself and some about how we use it. We both got to practice a bit connecting it and giving meds through it and it seems to be a little easier than I expected.  I will say the thought of never having to fight about drinking medicine again is very  nice.  The nurses got us all set up with home delivery of all our supplies and even had our pump delivered to the hospital so the nurse can teach us on ours tomorrow before we go home. 

At 6pm we tried to increase the speed of his feeds to 4oz in 30 mins because we were hoping to feed by gravity rather than pump which goes much faster.  Unfortunately it did not sit well, so we will slow things down and take it one day at a time increasing the pump speed as his body tolerates it.  After a little relaxing so his tummy would settle down we played a few card games and even had a few good laughs. Although laughing is not allowed per Cam’s rules because it hurts his stomach where they place the tube. LOL  Now we got cleaned up and are settling in for what we hope to be an uneventful night with good sleep.  

Thanks again for your support, it means the world to us!