Cameron Can 2012 Rocked!

What a spectacular event back in March! Thank you to all the family, old and new friends and supporters who were a part of a fantastic evening.  We've been working hard to tie up all the post event details over the last two months and could not be more pleased with the results of event.

Everything was nearly perfect and it could not have been so incredible without the hard working board members, auction donations, and monetary donations.  There were many, many people involved in making this event incredible and we thank each of you. I must give a personal thanks to Lynda VanDuerm (graphic design) and Christina Calvit (copywriter) my dear friends from back in the advertising days of my life, they truly set the the tone for a fabulously fun evening.   Jenny Anselmo of Scarlet Petal who created a beautiful room with her floral designs.

I am proud to share, on behalf of the Cameron Can Board, we raised an amazing amount of money, over $60K!  We were able to give Maureen's family a sizable grant and even get another family started with some much needed financial support for their 18 month old son, and we're planning to help them even more in 2013!  Finally we donated $10,000 to the Pediatric Hydrocephalus Foundation to assist them in their efforts to continue advocacy, education and research for a cure.

A very memorable event and we are so happy to be able to pay forward all the generosity bestowed upon our family last year AND this year.

A big thank you to all for you love and support.

 Photos courtesy of the very lovely and talented Allison Fonseca

Grant Family: Maureen Stathopoulos

 The Cameron Can Board of Directors

Ketchup and Mustard Day

It's been nearly impossible for me to stay on top of many things, this blog being one of them! Friday's at Cameron's school are Ketchup and Mustard day, so here's my best attempt on the last 3 months.

What have we been doing since late September! Anything and everything, working hard in therapy, loving school, extra-curriculars, juggling two kids in two different schools at two totally different times, advocating for special education students in our district and also enjoying fun times!

Cameron and Connor both are still loving school, Cameron had a great first report card. We are so proud of him and he's really come so far with writing his name since the start of the year. It's really rewarding to see him make such nice progress.

I've observed him a few days at school and he's keeping up as best he can in all areas. He tries all the exercises and activities in Gym which I love to see. He's not down on himself and doesn't seem to notice or care that he's not running, jumping, hopping or skipping like the other kids. He does know when something is a challenge and tires out easily is what I am hearing from aide. But he is TRYING and that is awesome!

He also seems to think he's the "mayor" of his school. A recent note home read "Cameron nearly fell down the stairs leaving gym today because he was distracted saying hi to all his 5th grade friends".

The kids in his class are great and we are hoping after a little show-n-tell with Cameron's braces they will start to understand he's not pushing them when standing in line, he's just trying to keep his balance. This is something the teachers have been working on, it's hard to make a group of 5-6 year olds understand the concept of balance when they can all so easily stand without moving in a line.

Health wise Cameron had a really good Fall, yahoo! Just after Thanksgiving things got a bit rough (I am coming to dread this holiday after last year's debacle). A trip to the circus, which I don't recommend on MANY levels, ended with Cameron puking all over and everyone going "Ewwwwww..." I was dying inside when it happened, not out of embarrassment but because I know my kid, and when he threw up I just knew it was more than too much cotton candy.

There's been a trip to the ER after some repeated bouts of vomiting. Yes, it's flu season and trust me we all went with "it's the flu" the first and maybe even second time around, but by the third round and the pattern of only happening at night, well you know this story.

As usual the ER visit led to imaging which showed, wait for it.... NO CHANGE... And so it appears as though we are heading down a similar path to last May-June and my favorite summer of 2010. But we're not jumping to conclusions, we'll wait for Cameron to tell us when it's a real problem.

We did have an appointment with the Neurosurgeon and she believes "something is brewing in that head of his" but it's up to him if it takes, 3 days, 3 weeks or 3 months to become a real problem requiring surgical intervention. She even had already spoken with the manufacturer of his shunt (Medtronic) and has a new idea on how we could treat this issue if we do go back into surgery sometime. He's writing his own history is what she continues to tell me, as he is unlike any other patient she has.

The good news is he's been pretty much back to baseline,with the exception of some increased muscle tone, for the last two weeks. We are monitoring the muscle tone and gait changes, holding out hope that this will all pass and be nothing. The weather change yesterday seems to have affected him as well, he woke up in pain last night and shuttled back and forth from toilet to toilet but never let loose.

If I know Cameron whatever "this" is, will slowly progress over time, giving us a false sense of security at times. So yeah, we're on edge. But I was pretty sure Matt and I were back to sleeping through the night vs. the week of staring and watching him at night, that is until last night!

Connor and Cameron are great buddies and I really feel so lucky that little surprise joined us, his demeanor is SO different from Cameron's and yet he has this super sweet side that I just love.

We are looking forward to Christmas at home, Connor tells me everyday that Christmas is taking FOREVER, in this very dramatic tone. Cameron wants a purple computer and a "play all day garage" that he saw in a catalog 2 years ago...ummm, Santa could use a little help on that one! Cameron is very much in the holiday spirit singing carols nearly every day, with a little Adele thrown in for a good measure.

We just enjoyed a trip to Michigan to celebrate my Grandfather's (Baba)95th Birthday!

We should all be so lucky. The boys loved seeing the Michigan family and friends.

And speaking of Birthdays...Happy 37th Birthday to DAD!

I will try to not let as much time pass between posts...a possible New Year's Resolution? But of course with the New Year comes all of our specialist visits, I've already booked Orthopaedics, Urology, a Flow EMG test, an MRI, Orthotics & Nuerosurgery, this should take us to March.

Oh what fun it is to ride...

We're Big Kids Now!

Cameron and Connor have hit the bricks for school, Kindergarten and Preschool respectively.

Both boys seem pretty enamored with this whole school thing, let's hope the sentiment remains for years and years to come.

During the first week of Kindergarten Cameron insisted on regular visits to peer into his classroom after hours, pleading to please let him go in and see Mrs. Bassing.

One of my personal favorite moments was Cameron exhibiting is school pride after receiving his official school spirit shirt at the Welcome to Kindergarten picnic. We were home not 10 minutes and he donned the oversized royal blue gem. While chatting with our 13 year old neighbor next door I overhead him say, in the cutest voice, as he points to the logo on his shirt "Bulldogs". He was so proud, you could just hear it in his voice.

He seems to be making this transition to General Education nicely, he has a one to one aide to keep him on task and keep him safe. It's really too early to tell how the whole "system" is working, his teacher and aide are great. Working in all of his related services into a half day program is proving to be quite a challenge. So there is a lot of back and forth to school after hours to get him the services. There is not a dull moment in our week and I am seeking out a large wipe board to keep my head on straight.

Connor LOVES his preschool, there are tears everyday he does NOT get to go to school. I can't seem to rationalize with him on this matter. At all. He talks about his friends and the hard time he had "deciding" which wheeled vehicle to choose during playground time at school. Hearing him tell us about his days at school is a wonderful sound, he's so proud of himself and I have to say I like this typical experience, a lot!!

In the vein of typical experiences Cameron had his first typical ER visit, what boy doesn't end up needing stitches right? Boys will be boys, during some rough play Cameron took a header into the coffee table, there was some screaming, by all members of the house, lots and lots of blood and a race to the nearest ER to close up a large hole smack dab in the middle of Cameron's forehead. A trip to a new hospital, some stitches and we were home. By far our quickest ER visit on record! Connor keeps asking me why are coffee tables sharp?!?!

It took this family 5 years before making an ER visit for stitches, from what I understand this is remarkable, yay us!

Making Plans

I am by nature a planner, I re-write my to do list at least every other day and carry around 3 months worth of paper calendars to try and keep track of our therapy, school, doctor schedules.

Cameron has taught me you can't plan for everything and I'm trying to become better at learning how to handle the unknown, in some cases it's become easier to wrap my head around this concept.

For instance I realize that Cameron could suddenly become ill at any time, this fact does not keep us house bound or from enjoying life. It changes some things though, like planning family vacations away from the Children's Memorial area, it gives me pause to leave Cameron overnight without us.

It's hard to find a balance because as any parent needs time away from their children to recharge, many would say those parents of special needs children need it even more.

After all Cameron and Connor need healthy parents in every sense of the word. I'm working on the letting go part, but it's not easy and when question arise relative to Cameron's health and he seems more in limbo, it's really hard to break away.

On August 1st Cameron had another MRI to follow up post surgery, this was 6 weeks since the last one and a huge marker for us. As I sat in Dr. Bowman's office on August 1st taking her through some recent early onset symptoms of a problem for Cameron she showed me the MRI and we agreed it was stable. I shared with her my concerns to leave the Chicago area both with Cameron and without. She said "go, go now, don't look back just go while you can".

And so we did. We green lighted our plans to visit my family in Michigan, some of whom we have not seen in two plus years. One week later Matt and I took a trip sans kids, courtesy of Matt’s company trip (*KBM if you are reading, yes he still works at the contest factory). It was a great trip to Napa Valley all expenses paid, and being that we were engaged there 9 years ago it was a little extra special. Of course there was far more anxiety with this trip having Cameron & Connor not with us, but I am proud to say we did more than survive, we had a wonderful time.

If given the choice I'd always like to make plans well in advance, but I’ve just learned if you have to “green light” a trip with only days before departure, it’s ok. Maybe even better so the anticipation doesn’t build.

A few photos of our travels…

Cameron and his Great Grand Father (Baba) take a nap together .

Baba and 7 of his Great Grandchildren

The Resident FISH Connor!

A Trip to Greenfield Village

5 years old!

Cameron turned 5 two weeks ago, hard to believe that little teeny tiny baby is now a 5 year old. He's come so far, defied the odds, taught us more life lessons in 5 years than some will learn in a lifetime. He's a hero, a fighter, and the sweetest and happiest little man, at least in my opinion.

Cameron enjoyed his first birthday party with all his school friends, he was beyond excited and really enjoyed the day. We figured it was time for a "friends" party as he asked me two months ago after attending another school birthday party:

"How come all my friends from school were at Luke's party?, I thought birthday parties were where a bunch of adults come over?"

He may as well have added and drink copious amounts of wine! Ha ha!

So off to the Brown Cow Ice Cream Parlor we headed with 18 5 year olds and it was a huge success.

--- yes, his name is spelled wrong, but who cares!

In the past two weeks since Cameron turned 5 I've learned this is a milestone from these two simple facts:

1) Cameron asked us if he could take a shower!?!? really????

2) Cameron graduated from his Early Childhood Education Class and next year is going to, wait for it .... KINDERGARTEN. For a former 32 weeker, with as many challenges as he's faced to actually be going to Kindergarten on time, well it's HUGE and it's been no small feat to get him to a place where we feel ok with this placement. More on this topic later, and is in large part why I have not posted regularly to the blog.

Happy Birthday Cameron you are an inspiration to many, we love you!!!

Scar Tissue

I recently came across some old CDs with photos from 2005 – 2006, I was delighted to find them, given our family photo history disappeared with my computer during the robbery.

As I began to upload them to the new computer I found tears welling up in my eyes, I have to be honest it caught my by surprise. Paging through the photos of Cameron’s beginning looking back I honestly can’t believe we made it through that first year, especially the first 4 months.

When you are in the moment you have no time to reflect, or process the reality of your situation. Which is for the best, or you likely wouldn’t make it through times of crisis.

As parents to a medically fragile/special needs child people will often comment to us “I don’t know how you do it?” It’s not really a question, despite the punctuation indicating as such, because in my opinion there is no real answer to this question.

Seeing these photos again reminded me of many things, but what was most surprising was I felt like saying to myself “how did you do that?” We’ve survived some of the toughest challenges a parent could ever face. Not without some scars of course.

As time goes by those scars of the past start to heal up as they are surrounded by the joys, the success and the promise of a future you weren’t certain existed. New challenges arise as you continue down this path, whether it be the things that keep us awake at night, the fears about the future or even the really crummy stuff when the intense medical problems rear their ugly heads.

And the scar tissue becomes irritated, sometimes too much and it really, really hurts.

The new wounds are sometimes raw and you’re not sure you’ll survive, but you do, and eventually they too will turn into scars. We must remember this when we are not certain we can make it another day.

This all came full circle for me as I changed Cameron’s clothes the other day, he has several scars, some more prominent than others but all are hidden, be it under his thick locks of hair or his favorite t-shirt. There is one you can barely see anymore, on his belly, the rest are either “fresh” or clearly visible to the naked eye.
Being reminded of the beginning of our journey in photos and then seeing the healed, almost non-existent scar on his belly, it made me smile. It was a sign of how far Cameron has come, and how far we have come. With time I believe all those scars will fade away, but the scar tissue will remain, as a way to protect us all and remind us that we have indeed survived.

This Photo was take in August 2006 within days of his 2nd brain surgery

This photo says it all....

Cameron CAN!

Happy New Year!
We survived the Holidays and salvaged a very nice Christmas after the turmoil that was our Thanksgiving. The boys were in full Christmas spirit, and pretty much bouncing off the walls for the entire week leading up to the big day.

A great Christmas day celebration was had and all wishes were granted, outside of the pink motorcycle that Connor really wanted. He came down and said "Where's my pink motorcycle?" his first lesson in you can't always get what you want. You'll see from the photos this was quickly forgotten once he opened one of several trains.

I'd have to say the best Christmas present of all, outside of not being in the hospital, was the unveiling of the Cameron Can Foundation (see link on the left sidebar) Be sure to check it out, just click on the logos.

We are so grateful to our friends who have worked tirelessly to start this foundation, and plan the inaugural event in March!

Going into January, when all of our deductibles, copays, coinsurance and insurance woes go back to ZERO is one of my least favorite times of year. Everyone else looks at a New Year with such promise, we worry about how all the medical costs headed our way.

But knowing how many people want to help Cameron, and us, well....The weight of the world has been lifted off our shoulders to know that Cameron's future is in good hands.

I personally have always wanted to create a foundation to honor Cameron and how hard he has fought, and will continue to fight the rest of his life. There are many families out there like us who never qualify for financial assistance, charity care and so forth despite life long medical issues. I have tried in vain for the last four years, so I look forward to the day when we can offer grants to other families just like us with the Cameron Can Foundation. Others can realize the reality to keep their hope alive that they too can be certain their child will not be denied therapies, specialists and treatments when the costs become too much to bear.

After our 2010 many people have repeated to me, "2011 is going to be a better year" I have to admit I was skeptical. But over New Year's weekend there was a small glimmer of hope. Everyone in our house got the dreaded stomach flu, except Cameron!

Cameron was a great doctor with the best bedside manner. He made sure all family members had the dreaded "green bowl" when they needed it and was saying the sweetest things to make us feel better. Connor is still convinced there was a dog, a cat, a fly and a spider in his tummy. All courtesy of our recent book choice: "There was an old lady who swallowed a fly".

So for Cameron to be the "missed" this bug, well that's got to be a good sign! Right ?!?! Oh and I found this perfect shirt for him...Happy New Year to all!

JUMP!

Cameron wants to Jump SOOOOO BAD! And we want it so badly for him.

Anytime he sees other kids jump he has the most amazing laugh, and you can tell he just thinks Jumping is the best thing in the world.

His school PT told me last week the class was working on jumping in hoops, and how badly Cameron wanted to do it. Of course they work with him towards this goal and he sort of jumps, but I think he knows it's not the real thing.

Last night we went to "Family Fun Night" at the school, Cameron LOVED that he got to go into his school at night. I swear this school experience is the best thing in the world for Cameron. The joy on his face when he's in the school is just immeasurable. Several of the kids know him by name and would call out to him, Dad would say to me "who's that?" I had no idea, but Cameron knew them, and they him. I guess this is what happens when your kids grow up, you don't actually know EVERYTHING about their lives. That's a tough one...

Cameron and Connor played all sorts of games, well Connor really just monopolized this one car game, I had to bribe our 12 year old neighbor, who was running the game, to just let him play it 5 times in a row.

Cameron's favorite was the "Cake Walk" - he really just liked being in the auditorium (this is where the Talent Show is Cameron would tell you if he were telling this story!). I got him to actually do the Cake Walk with me twice, but the rest of the time he just loved sitting in the seats and watching all the kids walk around and then JUMP off the stage when the game was over. I would ask him if he wanted to play the game, "I want to Jump!, I want to Jump" So he jumped off the stage with Mom's help and loved it.

Saturday we geared up for a trip to the circus, as we got ready to leave Cameron stood on the front porch and prounounced that he was going to jump off the porch. Oh no you don't!!! This would not have ended well and our trip to the circus would have been re-routed to an ER, interception successful!

The Circus was good, it's the first time we have ever taken Cameron to such an event and he handled it pretty well. I won't lie, at one point we tried to bribe him with Cotton Candy, which he's never had. So he opens it up and says to me "Do we eat this?" I wanted to say I wouldn't, I am sorry to all you cotton candy lovers that stuff is just wrong. But I didn't want to deprive him of the whole circus experience.




He also picked out some "noculars" at the overpriced gift table. We just love that he calls them "noculars", oh and he also likes to look at them from the wrong side.

Cameron, we love you!! We want you to jump, just as badly as you do, one day you will!

Connor is not forgotten, he got to spend the day playing with Grandma Randi and I'd say he really enjoyed it! As we pulled away from Grandma's house after dropping Connor off Cameron asked "Are we going to come back and get Connor?" I think he really loves his brother. I am sharing this with you all so I have it on record in a few years!!

Poll Time - Cameron's Hair

For those of you who are local the Chicago Tribune recently had an article about boys and long hair and how that is the new "trend". We receive many comments on Cameron's hair that range from "where does he get those curls" to "I see your mom still hasn't taken you to get a haircut!" to my favorite "He has a reverse mullet"

For the record Cameron has had two haircuts in his two years of life and he didn't mind them. Mom and Dad happen to prefer the wavy curls of our Chicago surfer boy but yesterday his hair really looked out of control (as you can see above)...

So we'd like to take a poll should we cut Cameron's hair or let it go as it will which is just about every which way!!