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!

Saying goodbye to summer in Long Beach!

Hard to believe one week ago today we were just heading off to Long Beach, In for a few days with Gramma Ellen and Grandpa George and now tomorrow I'll be walking Cameron into his first day of Kindergarten.

It was a truly wonderful, relaxing and beautiful week in Long Beach with great company that included many fine family members!

Grandpa George did a great job holding his title as Captain Adventure, growing up my father would take us on many "excursions" all memorable in their own way and some a bit off the wall which always led to a good story. So in typical fashion, Capt. Adventure schooled Connor in trying to trap and then play dodgeball with the beach seagulls as you will see below:

"So you take this crate and..."

Gramma Ellen was not to be left out of the fun as she took some pretty big risks letting their bird "Rodan" out of his cage on many occasions, much to the delight of the children, Connor in particular. Good news there was no dodge ball with Rodan, and after some time Connor and Rodan came to understand one another, despite the stick Connor was repeatedly poking at him. Cameron would squeal with delight anytime the bird flew around, it's amazing how children connect with animals.

Connor is holding the "stick" yet Rodan has decided to proceed with caution

Uncle Ed arrived a few days into our stay and he's likely thankful for this seeing as Connor, Cameron and Maureen busted into his room early one morning and jumped up and down on his bed. As I walked into this scene I felt really bad, and said so. Which Capt. Adventure piped up "Oh don't worry about it, I put the kids up to it".

The boys had a great time with all of the Conway family. While it took Cameron quite a while to fall into a routine every day, when he did feel comfortable he had a really good time. I imagine he'd say his favorites were playing "Build a Bear Workshop" with Maureen and swimming in the lake late in the day playing wipeout in the waves. All in all it was a great way to say goodbye to summer. The boys are already asking when we can go back...

Many, many thanks to the Conways and Hanleys for letting us share in the adventures

!

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

Thank you Peanut & Barbie!

Today I had the pleasure of attending the “Tend Her Heart” luncheon to honor Mothers of chronic and critically ill children, given by the Charles Tillman Cornerstone Foundation. For those non-football fans Charles "Peanut" Tillman plays for the Chicago Bears whose daughter at the age of 6 months old had a heart transplant.

As a part of his Foundation he has an annual lunch to honor mothers who spend countless hours at the area hospitals tending to their sick children. Charles spoke about his personal experience, learning and dealing with the news of his sick baby and need for a heart transplant. Two other mothers shared their stories and the room was then opened up for anyone who wished to share a story.

As I sat in the room listening to all these other moms talk in acronyms, throwing out medical jargon as if they all had an M.D. after their name,I was reminded I am not alone in this journey.

We all share this amazing bond,every single mother in the room was struck by some sort of tragedy surrounding their son or daughter. Some moms had healthy children up till a certain age, some knew of their troubles before they met their baby, and some have lost their child.

One mother spoke about how she could remember the street she was driving on, the clothes she was wearing and the song on the radio when she received the call stating her daughter had Leukemia. To this day she can barely drive down that street.

These words spoke to me, all the words today spoke to me and told me you are not alone. To know in a room of close to 100 women you could have a conversation with any one of them and they would truly get what you are feeling and have survived was pretty incredible.

What’s also incredible is how I found my way to this luncheon. Soon after Cameron was born I was dying to talk to anyone, and I mean anyone who had a child with special needs, so online I went. I felt so isolated in the first year, (and even today it still hits me) through a Mom’s Website I met a woman named Barb and we agreed to a “blind date” at the local Starbucks. It’s sounds like we met on eHarmony…ha ha!

Barb brought her son Johnny, and I, Cameron, we easily fell into conversation. Our two boys didn’t share any of the same diagnosis, but we still got each other.

John was born with a Congenital Diaphragmatic Hernia (CDH), somewhat ironic as it was suspected Cameron had this on day 4 of life at Prentice and thus the reason he was transported to Children’s.
I remember the day I met Barb and saw Johnny who at the time was on a ventilator, and he still is at night now at age 6. I saw calmness, strength and peace in this woman. She’s quite frankly incredible. Oh and she’s a Foster Mom, really this woman is amazing.

And so we’ve kept in touch, had an occasional play date with the boys, checked in with one another during the tough times. There have been unplanned meetings at Children’s on more than one occasion, both having been admitted for one reason or another.

Just last month as Cameron was heading into surgery, Johnny had been rushed to the ER, (he also suffers from seizures and they are often intractable). Barb and John were one floor below us, we were both tired, worried souls, but seeing her face and sharing a hug reminded me I am not alone.

Thank you Barb and Thank you Charles Tillman for the reminders today.

Oh and thanks for the NOOK! At the end Charles asked all the mothers to stand up, he announced all the Mothers would be getting a NOOK (e-reader) everyone cheered, Barb and I hugged, it was crazy and we all joked about how “Peanut” (Tillman’s nickname) had just staged his own version of the Oprah show.

A great day… now go hug, kiss, squeeze your healthy kids and count your blessings my friends. I just did.

XOXOX

Enjoying Summer

I was reminded this past weekend, as we all celebrated July 4th, last year Cameron was sick yet again, it was so nice to celebrate all together as family this year and reminds us to not take anything, moment or opportunity for granted. What fabulous weather, right!!

Everyone had a great weekend, there was lots of dancing by Cameron at our local Concert in the Park, I tried to get a video, and trust me it's worth a video but I failed. Possibly because at that moment our resident hooligan, Connor, was being "pulled over" by the Riverside police for riding a scooter in the middle of the concert area. Of course the scooter had to be impounded to our picnic area and this resulted in a very distraught 3 year old.

The parade was hit, if for nothing but the gobs and gobs of candy they boys received. Here they are waiting, waiting, waiting for the parade. I love the similar expressions.

We've hit the Forest Park pool, where a "code brown" occurred, I mean what's summer without some poop in the pool!?! This was Cameron's first day back swimming, great luck!

Cars 2 was another summer hit, along with a little summer school, summer camp... well we are making the most of summer I'd say.

Cameron is doing really well. We had our follow up MRI on June 21st and his ventricles are larger, which for Cameron, is a good thing. Dr. Bowman and I discussed the situation and Cameron falls into a very small percentage of Hydrocephalus kids that cannot tolerate smaller ventricles, even though that is what the shunt is in place for, to reduce the larger ventricles.

It's very much a guessing game as to how long this new valve will keep Cameron's ventricles in a happy place, not too big and not too small. Some of you may be asking why does he suddenly exhibit symptoms of increased intracranial pressure, yet it does not show up on imaging? and then it will resolve itself only to return days later? And why did he do so well with this shunt for 4 years and now all these recurrent problems?

Ok, maybe you aren't actually asking this question, but I am. There is no answer, outside of "we just don't know" the brain is hard to figure out and its resistance varies with each person.
So we're left to wonder will we get 6 months, 6 years or 6 more days from this surgery before problems present again. You could drive yourself crazy thinking about it all the time, so we don't. Sure any time he grabs his head, yawns too much or seems "off" I get a little nutty but I'd say for the most part we're doing good.

Dr. Bowman and I did discuss what's next if this happens again, she would likely do an ETV. This is the surgery that Cameron first had after he was born, I actually inquired after surgery if she could have just done this, along with the new valve, during this most recent surgery. But she explained it's carries more risk and she would never do something without discussing the risks with us first. Makes sense. And makes me nervous for what could be coming our way.
At one point while Cameron was in surgery I honestly thought I was going to throw up from the fear of what could happen.

But enough about that, for now we focus on the good, Cameron is healthy and we are making the most of our summer! Another lesson in take the the good times when you have them and make some amazing memories...

Father's Day - belatedly....

Matt said it best, the only thing he needed was Cameron home from the hospital. Wish granted.

Matt has spent 3 of his 5 Father's Days with Cameron at Children's, what a relief to have all of us together as a family to celebrate.

We treated the boys to brunch. The boys stuffed their faces mostly with items from the "Candy Buffet" and Matt got his fill of all manly meats and fish.

Happy Father's Day Daddy-O, as Cameron would say! You are a great father, you work so hard despite all the circumstances you just keep going and going, Bravo to you! Cameron and Connor are lucky to call you Dad.

And Happy Father's Day to the two Grandfather's; my dad, Captain Adventure! and Grandpa Chuck, the biggest Cubs Fan I've ever met!

The toughest 5 year old...

Is Cameron Dominick, yes, I am his mother so I'm biased. But I am telling you this kid is a rock star amongst the staff at Children's. He just rolls with it all and only once during our entire 5 day ordeal did he cry. When I left him in the operating room, that was the worst. And that was not pain, that was fear and love.

What a crazy 5 days, filled with so many emotions, not a lot of sleep, a room switch that left Matt cowering under his covers one night (ask him to tell that story). Let us just say that June 2012 when the new hospital opens and there will be ALL private rooms....can't wait.

On Friday after Cameron was finally feeling better and we went to the Life Center, the cast of Peter Pan was there to do a little performance for the kids. Cameron was super shy, but met all of the cast and Nana the dog (a giant puppet) it was awesome how the guy controlled this "dog". I loved hearing Cameron laugh out loud during the performance. NBC and ABC news were there and Cameron was on the news that night! He was SO excited when he saw himself and keeps asking to see it again. What's a little brain surgery when you are a now a celebrity in your own house, right!

Thank you to the many who sent well wishes and the balloons, stuffed animals and offers to help. Cameron is 5 now, and he understands what is going on, his shunt is a part of his life that he is starting to grasp. He noticed when all the other kids were getting balloons and presents.

One day I told him I was going to grab a coffee downstairs and his sweet nurse Elizabeth was going to sit with him for 5 minutes. When I asked if he wanted anything he replied "Mom, would you get me a stuffed animal dog, brown and white". I almost started crying, instead I quickly ran off to grant his request. He was SO happy when I brought him the dog and named him sparky.

So how's the hair you might be asking? He now has two incisions on his head, they went in to the same spot at September, about a 5 inch half moon shaped incision and a new 3 inch one a bit further down his scalp. Cameron will look in the mirror to check it out and asks when the stitches get to come out. They will dissolve, he's not really grasping this concept.

His long locks allow us to cover the incisions up for the most part, so as not to scare the kiddies. The day we got home we went out for a family walk, Cameron's hair was still in a mohawk from all the goop and by the expressions on some of the neighborhood kid's faces it was clear it was all a bit much to see.

He can't swim for 3 weeks, so the swim lessons are on hold and we created a "chain link" countdown for him to pull off each day as it gets closer to July 9th! He takes it all in stride.

I could write for days, but still trying to catch up on sleep, or maybe it's start sleeping again?

About 2 hours after Cameron came out of recovery and the Dr's rounded Cameron was doing really well at this particular moment, it was somewhat hilarious. They come by and he's sitting up in bed literally shoving Pirate's Booty into his mouth directly from the bag (thank you JENNY!!!) his hair is standing straight up and he looks like a guy who just came home from an all night bender. I think it was a little comic relief everyone, including his doctors' needed. The Fellow said, "So this is Cameron Dominick who just had brain surgery and looks to be doing quite well!" everyone laughed. Connor has been a great little brother, he understands Cameron has a big "owie" on his head and we need to be very careful. Many thanks for all your support.

Tomorrow is his 4th MRI in two weeks, we'll see how these ventricles look with the new valve in place, we'll see Dr. Bowman to talk about it all. Hoping they are a good size, but not too big...

Is it the Morphine, or are the Chipmunks and Chipettes above my head right now?

Post Surgery

Sorry for the delay, but we're exhausted.
Cameron came through surgery well, they put in a new valve and catheter. Only time will tell if this will work, and by time I mean days, weeks or months. My hope is months. Even if we can get just 6 good months that's fine with me.

If we find ourselves in the situation as the past 10 days, then we will discuss another surgery that has more risks involved, it's actually the surgery he had at 3 weeks old. ETV.
And then there is another even more rare option to add another valve in his chest.

I'll explain all this more in another post. For now we had hoped to be bringing Cameron home today, but he's been on/off with a fever all day and night. I think he and I slept a combined 3 hours last night. We had a donut together at 4am, that was fun.

It's just after 6pm and I left the hospital for the first time since Monday morning. Matt is on duty and because Cameron is now with a fever over 102 we are moved to room 327 - bed 2.
Matt just helped Cameron through some blood work (more sticks!) and catheter for urine (different than the catheter in his head, but same idea). Cameron hates this, but we have to try and find the source of this fever.

Pray for a source and NOT infection as that will lead us down a whole different, very nasty path.

Surgery underway

I left Cameron 20 min ago in the OR. He was very upset. This is tough, him getting older he now understands what is going on. We promised him visits from all his favorite neighborhood girls, and he nodded yes.

I just bought him Alvin, Theodore, and Simon stuffed animals from the gift shop and had to hold myself back from buying the Chipettes! He loves The Squeakquel.

He had a very sleepy morning, some head pain and low heart rate, hoping this brings him relief.

Now we wait....

Surgery is scheduled

Yesterday was a long day, followed by waking up around 4. Getting sick 3 times, back asleep, and then around 9 Cameron finally awoke from the brain fog.
Just in time for bed!
We watched a little wall-e and called it a night just after the midnight blood draw, don't ask me what that was about.

4:30 am rude awakening tons of pain, slept it off with some meds. He was feeling better around 8. We headed to the life center for 2 hours, they had an improv group there, Cameron thought they were pretty good. Even if their humor was more geared to the parents! They made funny noises and what 5 year old doesn't love that.

We have attempted lunch, but he's down and out again. Spoke with Dr. Bowman and is slated for 10ish tomorrow to do surgery. Assuming no surprises when they open him up a new valve will be placed. If this does not work there will be talk of adding a 2nd valve in his chest. I don't want to do this and I can tell neither does Dr. bowman because she wouldn't even discuss it in detail saying it's rather complicated and would like to avoid this.

So we are going to take this hour by hour and focus on an event free 24 hours and successful surgery.

Tomorrow will be hard, but we can do this! And most importantly Cameron can!

We'e opened our summer home

We're back....
A brief update:

We are in room 321 bed 2 or 5 I can't tell. It's the step down neuro icu so there are no walls, only curtains and 5 others in the room.
In all seriousness, we know the constant care room well and some of our favorite nurses have stopped by.  We even got to see Cameron's physical therapist who went on maternity leave in Feb.  Cameron loves her, and she is seriously the ONLY person who has gotten so much as a smirk out of him.

Unfortunately Cameron is not getting better, he has been asleep since 11am, with a brief awake period when they blew a vein putting the IV in.

As I type this is heart rate is dipping below 70 repeatedly and so the loud alarms are going off.  The plan is to page dr bowman once we get the bolus complete.  She's out of town till tomorrow so if surgery is going to happen, which looks all but certain, we want to wait for her.  

I spoke with dr smith, the neurosurgery resident at length, he's good.  I like him and he's cute.  Usually the cute ones are assholes, not this one.  

Once I review all our questions with bowman I will send a more detailed update on what the problem seems to be.  For now I just hope he will wake up soon and show us some sign of improvement.  
Thanks for all the well wishes.

inpatient until then?  
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Sent from my iPad

On Jun 13, 2011, at 11:48 AM, rory.dominick@gmail.com wrote:

We do not have an acute malfinction. They are getting Bowman on the phone and recommending we be admitted to be sure he does not deteriorate and try to get some improvement?. Not sure when we will talk to Bowman but it will be before a likely  surgery on Wednesday. We may be inpatient until then.

We are back in the ER. Bad night and rough morning of vomiting. Waiting for MRI and shunt series.
Heart rate is low they are concerned he actually might be malfunctioning this time.
Will update once we have results. As of last Friday Bowman's office had suggested Surgery this Wednesday. But we want to discuss this suggestion  in detail first.  I will try to update blog later.
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Summer 2010 vs. 2011

I lost part of this post I started to write tonight and now I can't go back and redo it, so below is part of the original post and the cliff notes "start of the post"

We want a good summer, last summer sucked with all the hospital stays, tests, and surgery. We even were thinking about a family vacation outside of the chicago area, I never pulled the trigger my gut wouldn't let me.

With good reason it appears.

Thursday June 2nd - last day of school, a wonderful day, a happy day.

Friday June 3rd - the first day of Summer. We spent it at Children's Memorial Hospital.

Signs of shunt malfunction Thursday late at night, up most of the night, at ER by 1pm Friday. Imaging by 3pm.

Cameron now hates MRIs, cried hysterically during our April one, it was awful tears and convulsing.

Friday in anticipation I spent much our time waiting preparing him for the MRI. This would unfortunately be a case where no amount of preparation would help.

They wheeled us into the sub basement of the hospital, typically I will wait outside the basement machine (not the others, don't ask me why), but this time I told them I'd need to be in the machine with him due to recent issues. As soon as we got down the hallway Cameron saw the MRI machine and he flew into hysterics. It was terrible. By the time we got him into the tube he was at least no longer convulsing in tears so we could get the images, but I HATE this for him.

We returned to the ER room and he slipped back into a deep sleep. The resident comes in to report "Actually his ventricles look smaller!"

I get it she doesn't know our history and only knows that when dealing with Hydrocephalus you are looking to see if the ventricles are enlarged from the most recent films. She's almost excited by this prospect. Sorry to bring you down, but actually small ventricles aren't good for Cameron and this is not good news at all.

She was paged about 3 times in the 3 minutes we spent together, I sent her off to deal with the pages and come back with the attending so we can talk history and what this really means.

The full neurosurgery team returned in about an hour and I saw the images, not what I wanted to see, there is a significant change from two months ago...but we all agreed immediate surgery was not appropriate and we happily trotted back home with pretzels in hand.

So for the last 4 days I've been researching, as usual Cameron doesn't fit into the typical box of Hydrocephalus, and it requires me to advocate for him making sure his medical team is looking outside of this box. A great game of phone tag was played for two days straight with his neurosurgeon and finally tonight we talked. You'd think I'd feel some relief now that we have a plan, but I don't. I feel worse, I feel stuck, I feel we are starting the hell that was last summer all over again, I feel like I want to cry.

We're going to do another MRI, likely tomorrow. We talked about another surgery if the symptoms return. I shared my concerns about not wanting to repeat last summer, the Dr. appreciates my being proactive but made it clear that there is just no way to ever know what's going to happen and trying to figure him out is not easy.

Maybe I feel the most dread about having to take him for another MRI that he hates so much so soon after the last one.

So it starts again, listening with one ear open at night for sounds of distress, wondering if tomorrow is the day he'll wake up miserable and I'll lose the happy Cameron. I kept my CMH bag packed once we returned home last Friday, ready to go at a moments notice, the green bowl has been unearthed.

We've felt fortunate for the last hospital free 4 months, we were overjoyed with a "good" routine MRI report in April, and we've been grateful that the IEP season did not also bring us any health concerns (I can multi-task like a machine, but not when it involves my son's health).

I have do have faith we'll get to the bottom of this, but I sure wish I could snap my fingers and make it stop.

Education Woes

I've spent the better part of the last 3 months digging in deep to get Cameron an appropriate education in our school district.

I've learned a lot, it was as if I was back in college, although this time I was studying for the exam of a lifetime. I could write about 1,000 words about this process and how frustrating, sad, and maddening it was and it doesn't have to be this way, but I don't have much left in me to put pen to paper in this case.

Hopefully over the summer I can devote some time to a post that would be helpful to other parents of children with IEPs (Individualized Education Plans). We'll see, it's on my to do list.

To sum it up we are taking the leap and sending Cameron to Kindergarten next year, with a 1:1 (individual aide), while I don't want him to come to rely on someone it's best for this particular transition. I have hopes that after this first year in the general education setting we can move away from this set up. He's going to be receiving a TON of resource minutes (OT, PT, ST, Social Work, Special Education Consult), part of me wonders how they will effectively fit all those minutes in a half day program!?!

There were many, many people I spoke with about this process family, friends, friends of friends and more so I want to take a moment and say thank you to all of you who listened, gave me advice, called attorneys and more to help us work through this difficult transition.

Yet another reminder of how fortunate we are to have the sounding board we do. Thank you all.

Of course it also reminds me of the long and winding road we are on, it's not easy in any area.

In closing I'd say you can pretty much count on my being "absent" from March-May most every year, it's affectionately referred to as IEP season for us special needs parents, not my favorite time of year to say the least.

For now it's summer, Matt and I took a collective deep breath last week and have banished all IEP talk for a few months, that is, until September when school starts...

Happy Summer. Some Light Reading over the past few months...

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!!!

Cameron Can. Cameron Will. Thanks to All of You!

The inaugural Cameron Can event was a HUGE success! If you were there we hope you had a fantastic time. We feel terrible that we didn't get to speak with every single person who came and there were so many that came from far away, we really can't say thank you enough.

It was such a humbling night and we are so proud of our friends for putting on a truly top notch event.

We feel so fortunate to have such supportive friends and family, it's because of everyone who gave to Cameron Can in many forms that we can take the financial worry off our list for the near future and we can begin to provide Cameron with some services we've always wanted to, such as private occupational therapy swimming, but could never afford before.

The success of this event also allows us to take our energy and focus it on Cameron's educational needs. We are embarking on the transition from special education to general education for next year, and this process is quite daunting and requires a law degree, patience, fight, tears, and a lot of fear. I'll dedicate a future post to this topic.

I am reminded with this new charge of finding the appropriate education for Cameron that nothing with him will ever be easy. We are continually confronted with fears, concerns and stress relative to his care.

He's been sick again, will this winter please end!
Concerns raised from school about stability, a sunday morning vomit, words we don't like to hear "my head hurts" and we all freak out. This is our life, and it's tough knowing when to freak out and when to reign it in. We are better about watchful waiting.

He threw us again for another loop this Monday night with a grimace on his face of extreme pain, clutching his ear and his head. A rush to the pediatrician at 7:30pm. He looks in his ear and says the words I've never heard before, but am so happy to hear. "It's NARSTY in there" Cameron, almost 5, has officially gotten his first ear infection. Yahoo! I celebrate by taking him for superman ice cream next door, even though he's beyond miserable he does not protest.

Connor had a similar thing about a week prior, oh how different things are when you have a healthy child. We dismissed Connor's complaints, lack of sleep and general misery rather quickly with, he's sick. Didn't even take him to the Dr. kids get sick, that's why god invented germs! Or at least that's what my pediatrician says.

Cameron's symptoms can never be dismissed, nothing is ever easy or without an extra dose of fear. No matter the topic.

Well I could go on and on...in good reports Cameron had an MRI yesterday (routine post surgery) Dr. Bowman says "I'm happy with his ventricles" I've heard this before and I hope it remains the case for many months. Orthopaedics was pleased with an increased range of motion, bracing him at night is really showing some success. His hips are still super loose, with major rotation but there's nothing we can do but surgery and we're waiting many years before considering that option.

Long, long post...much to catch up on. Thank you from the bottom of our hearts for the success and contributions to Cameron Can!!!!
xoxxo

A bad week followed by a big week...

Let's see what's new?

Despite recurring illness in this house, be in the arctic sniffles (as Cameron's calls them) or the stomach flu (hit this how 3x this year!) we are surviving what I hope are the last few weeks of winter.

We've already had our 2011 ER visit to check for a shunt malfunction, turned out to be a flu. Thankfully. Hopefully it will be a few months before we head back to Children's ER, but I know it's part of life for Cameron.

Which brings me to the bad news, Mr. Miller, our sweet cavalier passed away last week. He's been sick for years with something common in the breed called Syringomelia and also Hydrocephalus, yes that's correct, both son and our dog suffered from the same condition. Miller began having seizures at 6 months old, before we even had Cameron. He's had a rough life (the dog) lots of medications, lots of seizures and he finally had enough last week. It was a hard day saying goodbye to Mr. Miller and the boys are asking many questions and a lot of "we miss Mr. Miller".

Cameron wants to go speak with the Dr., his exact words when I came home, "I want to go talk to that doctor" I am treading lightly as we try to explain to Cameron that Miller was sick. Saying he went to the Dr. and was too sick to come home, weighs a bit more heavily on Cameron, and us.

Some of you probably think I am nuts making this corealtion, but trust me he's asking a lot of questions and this child is far more perceptive than we give him credit for...

Well enough of the sappy stuff. We have a big week, Cameron goes in for his Kidney ultrasound and urology appointment Tuesday, expecting good reports!

And Thursday is the Inaugural Cameron Can Event PARTY.GIVE.LOVE! We are so fortunate to have an amazing Board of our dear friends who have taken so much of their personal time to help our son!

It's going to be an amazing night filled with food, drinks, great silent auction items, raffle items and Cameron and Connor will be there!! What more could you want??

Can't wait to see all of our friends and family coming in for the event and meet all the new friends who will be there to support Cameron.
If you want to bid on Silent Auction items or even get a last minute ticket visit www.cameron-can.com. (or click the link on the left side).

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!