Hot Wheels & Shoot The Moon

Two childhood memories for us that summarize our last month...

Connor is flying through the streets without training wheels on his bike, we had expected this to take hours of practice in the school parking lot.  I was even prepared to pull out an article from the newspaper I had saved years ago "How to teach your child to ride a bike".

But Connor pretty much just took off just as fast as the training wheels were taken off.  It was great to watch and cheer him on, he was so proud of himself, as were we.

Not to be outdone of course Cameron stepped in.  For the first time ever Cameron actually rode his adapted trike, this three wheeler has been collecting dust for the last two years.  No matter how often we tried to coax Cameron into trying the trike out we never got him more than a foot out of the garage.

 Apparently all it took was seeing his little brother flying by as Cameron pronounced "I want to ride my bike!" we were delighted.  As we strapped his feet in the custom pedal holders we weren't sure how long this would last, but he kept going and going. Even took a tumble and just kept on going.

 The hardest part about the trike is his feet are indeed strapped into the pedals so when he falls the whole bike and Cameron go crashing down in one piece, he can't help himself to get up.  Although it's only happened two or three times it scares me to watch this trike essentially crush him, but he has yet to let this stop him.

In these moments we are reminded of what a true blessing Connor is, he pushes Cameron in a way no one else can.  Although you will hear Cameron saying out loud "I'm not as fast as Connor, but when he stops I can keep going and then for a little bit I am ahead of him" he never is sad or frustrated by this fact.  He says it just as it is, the fact of the matter.  Connor of course always has to win so we are working on reminding him to let his brother take the lead every now and again.

Huge accomplishments for the summer I'd say!

And the wheels continue to turn in our heads ever since Cameron's surgery.  While the recovery from the actual surgery was the best, the recovery of getting Cameron back to "good" has not been so quick.

In the past we usually get the Cameron we know back following a surgery, the 100% Cameron.  This round maybe got us 50%, we'd tell each other he just needs more time, but once the headaches returned we knew something wasn't right.  The hospital bag was packed one evening, ready to go as Cameron was crying in head pain.  It passed after several hours, as we were days away from his scheduled MRI and knowing his surgeon was on vacation we held out at home.

The MRI was two weeks ago, Dr. Bowman walked in to the room saying "How is he?" with a look on her face that told me she would be surprised if the answer was "He's great!"  We shared our concerns and symptoms and then looked at the image.  Now his ventricles were too big, a known risk of the surgery and valve change, so we all agreed it would be best to dial the setting down to 2.0 from 2.5 (the highest setting possible).  The good news it's super easy to change the setting as the valve is programmed with a magnet (thus the reason I try to keep him away from magnets!).  So we are on week 2 of being at 2.0.  I wish I could say he's back to 100% but he's not, maybe we are at 75% now?  I don't even know anymore.  

He has another MRI in two more weeks and we'll see how his symptoms and images look.  Dr. Bowman explained we just need to find a place where his brain is happy.  And honestly this is far from a science it's like a guessing game of shoot the moon, how far should I pull the levers apart, ok now bring them back in, apart, in...and so it goes.

I sincerely hope to be able to post more often with more of our daily fun vs. always talking about something medical, but I am exhausted.  I even left out the part about his kidney, despite being referred back to Kidney diseases after some elevated results on his last two rounds of urology work ups, his kidney function is good!  There is a small hiccup that will require us to perform yet another test but we were told "no rush" and so I have yet to complete said test.  When the box arrived with all the materials for said test  it was addressed to Cameron, he got all excited convinced it was a toy, when I told him it's something we need to do for the Kidney Dr. there was an audible groan.  Yeah, we'll wait.

We've packed in tons of fun in between all these moments of uncertainty.  Cameron is back at the pool and happy to be wet!

4th of July was great fun as Cameron watched the band in awe and helped make an awesome cake

A Saturday morning sidewalk art show where the boys honestly tried to sell their artwork out of our garage - it's a hard sell, especially at 8:30am on a Saturday

  Cantigny Park to see old tanks and splash in fountains, the list goes on and on...

 




One month of summer to go, let's make it a good one!
xo

Wide Awake

Cameron loves this song by Katy Perry, he plays it nonstop and it's a perfect summary for how he's doing post his 5th brain surgery. WIDE AWAKE!   (yes occasionally my son listens to Katy Perry, go ahead judge me if you must) 

 We have high hopes he will show us in the coming weeks (and months) how well this shunt is going to work for him, and how wide awake he can be in school, camp, and at home when his brain is cooperating with him.

Here's the deal, he is a rock star, brain surgery #5 was by far the BEST recovery he's ever had. I know he had so many pulling for him, thank you!!!

If you like to read and have time to kill, here's the full back story. 

Cameron has been struggling for the better part of this year, it's subtle things;  being sleepy, irritable, gait disturbances, more distracted at school and home, shorter fuse and then some episodic headaches, all of this up and down for months.  The minute we would think he’s “ok” signs would appear and you just go crazy thinking you are making something of nothing?

 We had actually gotten to a point where I felt as though no physician was getting my concerns, so I just backed off the idea it was his shunt and two months ago we booked an appointment to see a psychiatrist to rule out ADHD.  

It was Tuesday morning, June 26th and we met with the team of psychiatrist's at Lurie Children's to review their thoughts on our first appointment and all data we presented.  In 20 minutes they summed up while sure he has some signs of ADHD, he’s also a 6 year old boy and he’s allowed to have some of these signs, throw temper tantrums, be distracted and so on.  As I listened to this and Cameron dozed off to sleep in my arms (it was 9:30am) I thought here we go again, another “non-answer”.  The physician told me to just let him be and try not to figure out they why’s and what’s.

As I began to speak my voice started cracking, I worked hard to hold back the tears, I can’t stand NON-ANSWERS.  

I’ve worked in vain for many years to try and get answers about many of Cameron’s conditions. 

·      Dandy Walker Variant (I gave up years ago and I’m ok with it)

·      Cyclic Vomiting Syndrome-how could my child really have this? Even traveling to Milwaukee to speak with the expert.

 MD is not behind my name, although I’ve been asked. I am not I tell them,  I have been doing “this” for 6 years and I am his mother and I know when something is wrong with my child.  I am officially going to add MD to my name (Mother Dammit) they’ll love my use of slang, don’t ya think ?!?!

Of course I didn't want to add ADHD on our list, I also didn't want someone to not address what's been going on, as I have been saying for months something is wrong with him, as have his teachers at school and therapists. 

Ok moving back to the psychiatrist, I spoke about my frustrations and then finally came around to their suggestion, maybe I should just stop worrying about this and chalk it up to his age.  Eventually starting to guilt myself into thinking this up and down life Cameron’s been leading for the last 4 months was all made up in my head.  We walked out of Children’s and onto Michigan Avenue for a day of fun with cousins Brooke and Lauren who are staying with us for the week.  

I pushed it all out of my head…until 6pm that same night.  Cameron got sick, within 30 minutes of having the time of his life, laughing and playing with Brooke, Lauren and Connor.  Matt screamed for me and the process began.  Throwing up, terrible head pain and a lifeless boy who only minutes ago was loving life. 

After several rounds our pediatrician sent us to the ED.  By 1am Cameron was admitted.   He did enjoy all the new scanning rooms at Lurie, they are pretty awesome, the CT scan looks like a submarine and X ray is a Navy Pier Mural complete with twinkling stars on the ceiling to distract the kids on the table.  It’s SUPER quiet in the ED, not at all like the old hospital, almost eerie.  I used to walk out of our room and basically fall on top of a nurse, at Lurie I stepped out once and couldn’t find a sole within earshot.   

Scans complete and of course the typical “his ventricles are not enlarged”.  As I spoke to the Resident Neurosurgeon, I had to bring him up to speed on Cameron and do my usual talk about how he’s different and not your textbook case.  I knew well enough from past experience to not push matters and wait to actually see our Neurosurgeon.

2:30am we were all tucked in to our private room, such an improvement vs. the 6 bed acute care at CMH.  Cameron’s heart rate was on the low end, putting me on the edge of my bed literally, (I actually had the closest thing to a bed in a hospital – wonderful). By morning he seemed better and only one bought of nausea. Head pain was consistent but not debilitating thanks to some drugs.  I was thinking we’ll go home and wait this out till another round hits. 

About 3pm Wednesday we saw Dr. Bowman she ordered an MRI, which was done in record time, and we soon learned his ventricles were actually quite small and it was best to do surgery now.  I believe her exact words were “We’ve been looking for an excuse to do this so let’s do it”.  Really?  Had WE been looking for an excuse?  I know I was because I felt strongly we were back in the small ventricles area but I didn’t realize Dr. Bowman felt this way.  Vindication! I finally felt like she understood me, and most importantly Cameron.  While her and I had actually not spoken since clinic in February she clearly has been watching and listening behind the scenes to our scans and discussions with other doctors.  She totally gets it.  She is also the most conservative NSG I know at Children’s, so if she says it’s time, it is.

7:30 pm we met with Dr. Bowman in pre-op and reviewed the plan. Including putting Cameron’s beloved stinky dog Neigh Neigh into a sealed and labeled bag so he didn’t get lost during transport (circa 2007). 

Cameron cuddles with a plastic bag holding Neigh Neigh

Surgical Plan (for those technical people):   A new valve and  Delta Chamber (anti-siphon device) were inserted, this is what we’ve done in the past but for the last two years it has not stopped the cycle of his ventricles overdraining.  This time the Delta Chamber was moved a few inches down the catheter to allow for a higher pressure setting.  Cameron is her only patient who has this issue with being symptomatic with smaller ventricles.  It’s quite common for this to happen to hydrocephalus patients to get small ventricles, often termed being “shunt dependent”,  but it’s much less common for these kids to become sick as a result and leads to a lot of misdiagnosis and frustration (cyclic vomiting anyone?!?). 

We followed our routine of mom dressing up in scrubs, getting Cameron into the OR and walking out as they put him under.  Never gets easier. 

By 10pm we saw Cameron in recovery, he was naked as a jay bird nurse said, he didn’t want anything but blankets on.  Ok!

His face was really red from all the tape and really sleepy,  some drugs stopped the tears from the head pain. Being # 5 of these surgeries we know what to expect on his head so it’s not as much of a shock.  He has two large incisions on his right side.

 We got settled back in our room around 11:30pm Cameron and Dad fell asleep watching Cars. Mom got some much needed sleep on the pull out couch.

By Thursday morning he was feeling pretty good, hit the play room for face painting, took a snooze and had his cousins come for a visit!  Last does of medication was complete by 5pm and we hit the road for home. Record recovery!!! 

Another summer started with brain surgery and no swimming for three weeks, but if this new valve set up can finally crack the code of Cameron’s brain it’s a small price to pay.

He’ll be followed with an MRI in 3 weeks. 

With any shunt revision there are inherent risks, infection for up to 6 months post insertion, general shunt malfunction and of course in our case this higher pressure could backfire causing the ventricles to become too big.  As always we’re on alert.   

Thanks to all for all the FB love, texts, calls and emails. Knowing how many people are praying and supporting Cameron (and us) means more than we can express.  Let's hope June 2013 does not bring a surgery, this is year 3 of a hospital summers, enough already, don't ya think! 

Fun in the Life Center with Connor and Lauren

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

Ready to Rock!

Of course I had intentions of writing an update well in advance of the 2nd Annual Cameron Can event, but life somehow gets in the way, the last minute prep for Cameron Rocks on is all consuming and yet so rewarding!

We are 48 hours from the event and the outpouring of love and support for our young foundation is nothing short of amazing, we are so blessed and lucky to have friends, family and mere acquaintances giving to the Cameron Can Foundation. Every one of you is responsible for the bright future of Cameron, and now Maureen, the first of many Friends of Cameron grant recipients. It's hard to believe our hope and vision for this foundation is becoming a reality. To be able to help Maureen, and other families in the future, is all made possible from your support and the hard work and dedication of our Board.

I invite you to learn more about Maureen, the 2012 grant recipient. Her story you will read is varied from Cameron's, Hydrocephalus affects every child differently, one case is seldom like another, similarities may exist but the path in which that shunt will take your child is truly unknown. Each child having to face a different set of circumstances and needs is all the more reason there needs to be more research, and thus our partnership with the Pediatric Hydrocephalus Foundation.

We hope to see many of you at the event, so we may thank you in person, it promises to be an extraordinary evening made possible by all of you.

Meet Maureen...


Our sincere gratitude for your continued support!

Home

Four days in the hospital, only two weeks post our last two day stay, it's a lot to take. The fear of what's going on, and no answers only made it worse. Standing at his bedside for close to 96 hours straight, little sleep, two quick showers in the hospital and coffee every morning brought in by Aunt Amy - god bless you Amy.

We came home Thursday afternoon after four days of relentless fevers at 103. The minute we thought we kicked it out of him, he'd spike. Ironically it was not the fever that brought us to the hospital, but it's what kept us there. We initially went to the hospital because Cameron began throwing up, crying with intense head pain and slipping away from us. We pushed this trip off 12 hours before I just gave in and took him, once our pediatrician couldn't find the source of the fever (ears, throat, nose etc.) once the head pain and vomiting starting Neurosurgery directed us to come in. There were many cultures, pricks and swabs. Cameron hated the throat swab the most and I always hate the Shunt tap the most (they stick a needle into his head right where the shunt valve is an draw CSF out of the valve.)

Cameron didn't even wince. I looked away. I am telling you this boy is as tough as they come.

Cameron has been home for five days now, he's feeling better and the source of his fever was finally uncovered Friday evening when he awoke from a snooze on the couch with a red rash all over him. Matt panicked, I rejoiced! "It's ROSEOLA!!!" Never have I been so overjoyed to see a child with a rash. I dialed up our pediatrician to share the good news, to which he replied "You just made my weekend!"

Yes, this all sounds crazy, but a source for the fever is all we ever wanted. Do we think there was some intermittent shunt issues on Monday, yes, we do. But images are stable and honestly all anyone wanted to focus on was getting Cameron to wake up and feel better, fever free. It took days, but it happened. Of course based on my research it's a bit rare for a nearly 6 year old to get Roseola, and he seemed to get a pretty hefty strain of it. But it's over.

I am sure many of your own babies or children you know had Roseola and you might be thinking that's why they were in the hospital? I'd agree with you, if Cameron didn't have all this other stuff going on, the number of shunted children who end up in the hospital for purely observation is hefty. You just can't risk missing something.

Now we take a deep breath, enjoy our time at home and hope it's a long time before we return. Cameron is set up for a few planned Urology tests in early March followed by his MRI at the end of the month.

Coming home is always hard, as we have to then address the emotions of what's just transpired and the toll it takes on our family as whole. Cameron missed Valentine's Day, the 100 days of school celebration and much more. That sucks, a lot. This is when Matt and I start to feel like no one could ever understand how hard this all is on us and even more so, on Cameron. You may think he doesn't remember this stuff, trust me he does. He's asked me consecutively every morning before school "Did I miss clash day?" Inconsequential in the grand scheme of things, true, but how can I promise my son that he'll be there next year. I can't.

Thursday as we were awaiting the final ok to be discharged I walked out of the room for less than a minute to see where our nurse was. As I walk back in I see Cameron is upset, he's not crying but something isn't right. I ask him what's wrong, he says nothing and begins to cry really hard, I worry he's in pain again. He won't say anything and through a thumb in his mouth whispers "nothing" every time I ask what's wrong... He doesn't want to talk about what's really wrong.

The neurosurgery NP comes by and sees him, she becomes worried, I pull her aside and we both agree he just needs to go home. If he's not ok later I will just bring him back, but we need to get him out of this hospital. This is the first time we've seen Cameron express some emotion related to his health, there were no words. Upon arrival at home and when rejoined with his many toys he started talking again, playing and sounding happy.

We are slowly going to work with Cameron to explain his conditions in a manner that is age appropriate in hopes that he can learn to express how he's feeling emotionally and physically as he ages. As Dr. Bowman said one night "Shunts are hard".

They are, and this is not an easy path we are on, I vaguely remember 2008 to early 2010 we were humming along, there were few ER visits, hospital stays, even a time when the neurosurgeon said "I wish all my hydrocephalus patients had ventricles like Cameron's" how things have changed. The therapies and developmental issues will always be there but the constant medical worry ...ugh... Some days you just have to remind yourself to breathe.

Thank you to all my Riverside friends for helping with Connor, the offers to cook meals, and to Gramma Ellen for hanging with Connor for a day, knowing he could stay in his own house for more than one hour in the morning put us all at ease. You have a new buddy that's for sure, not only in Connor, but I might hire you to do my laundry all the time! Hugs to the Burkett's for the awesome balloons and to everyone for the many well wishes.

Shamless plug: Get your tickets to Cameron Can! These kiddos with Hydrocephalus need you! I'll post soon updating you on our Grant Recipient Maureen Stathopoulos, we are very excited to be doing good for other children and families like our own.


Here's Cameron killing an entire small cheese pizza on Monday! Feeling good....

The latest

Forgive me for the lack of update following the MRI last week.
Below is a long summary of the results.
Today it's 6:30am and we've been admitted to Children's trying to figure out what's going on with our guy.
He's been in pain and asleep for close to 24 hours now. As usual imaging is not helping us determine definitively
What is going on. A high fever seems to be throwing everyone off course and leading us to believe it's a virus. But his blood counts are not crazy.

Rounds are soon, hope to know more. Forgive the writing, on my phone.

Below is last week's email summary.
Cameron had an MRI at 7:30am this morning, and saw Dr. Bowman (neurosurgeon)
at 9am, followed by Orthopaedics Dr. Sawroop.

As usual Cameron is throwing us a curveball and his ventricles have returned
to their "pre" collapsed state, meaning his baseline.  This of course
shocked all of us, including Dr. Bowman.  

What's puzzling is we are still seeing signs of a problem in Cameron's
behaviors and the intense pain he is in (at times).  Saturday during the day
he was not at all himself and that evening was in a ton of pain, a trip to
the hospital was debated but we waited it out at home.  He did wake up
feeling better.  

Over the last 10 days we've seen many subtle signs and had the one true
"episode" of visible pain.  He is struggling at school and seemingly not
with us at times.  

Further there were two days last week where he shunt line was very swollen
and red by his neck.  We did not go to the hospital as it went away in both
cases after two hours.  After showing Dr. Bowman the photos she said "I
would have LOVED an image of his ventricles at that moment".  Of course the
one time I don't take him to the hospital.  All of this is making me doubt
myself.  

She believes his body was pushing CSF over the ventricle and the shunt or
catheter was clogged at some point and fluid was pooling at his neck and
causing the shunt tube to bulge because there was so much fluid in there.
So you could theorize 1000 ways what this all means and Dr. Bowman does not
have any answers.

Her suggestion is we wait 6 weeks and do another MRI, continue to monitor
and log symptoms.  Her hope is we give his brain some time to regulate
itself back to his fuller ventricles and ideally these symptoms we are
seeing start going away.  That would be great!

There was some talk of an EEG, and ICP (intracranial pressure monitoring)
but these were just things that were being thrown up against the wall.  

Bottom line we are not doing anything right now, outside of continuing to
monitor Cameron and quite frankly live on edge.  This appointment, although
good to hear we aren't going into surgery tomorrow, was very frustrating,
it's hard to see all these signs that are standard Shunt complication
symptoms and yet we are not going to do anything about it???

So we are waiting for any of these options:
1) Acute Malfunction (meaning a serious problem that without question
requires surgical intervention)
2) Symptoms we see now slowly go away and Cameron comes back to us as close
to 100% baseline, images on 3/20 are good and we all cheer
3) Symptoms persist, we log, we go to the ER during intense episodes and end
up in surgery should his vents collapse again or the symptoms just become
too much for any of us to bear not doing something - surgery? or the other
options above.  

Regardless of what option becomes reality the bottom line is the next few
days and weeks are going to be difficult, any small sign and we worry, the
bigger signs we worry more and wonder should we be at the hospital or wait
it out at home?

 We've already spent the better part of the last year and a half in this
limbo spot feeling a false sense of security at times.  The last 10 days
have really sucked,  I can't explain it properly but the worry is killing me
inside.  The prospect and anticipation of surgery and just wanting to make
Cameron feel better is daunting.  

I posed the question to Dr. Bowman, is it possible this is just how
Cameron's life with Hydrocephalus is going to be?  Personality changes,
intense headaches, gait disturbances mixed in with periods of feeling ok?
She doesn't know.  And I don't want that life for Cameron on many levels,
most of all for the impact this all has had on his performance in school.  

Yes, everyday I tell myself it could be worse, we are lucky for the all the
things Cameron is able to do and this is what keeps me going.  He does not
have any number of terminal or terrible diseases, he can walk, talk, feed
himself and so on.  But there is no alternative scenario that can take away
the worry and fear of seeing your child in pain and knowing something is
wrong with his brain and not being able to know what the ultimate impact
will be.  Asking yourself as you spend another sleepless night trying to
comfort him out of the pain if this is the time to take him to the hospital
because it could be really bad?  

The truth is Hydrocephalus for Cameron has never been typical, looking at
expected outcomes and what has worked for other children does not help us.
At times I am left fearing the worst will one day happen.  

So for the next 6 weeks my gut will steer me, as it has yet to steer me
wrong in the past.  

May it be wrong this time around, as I am all but certain this shunt needs
to be fixed, but I am not about to send Cameron into an "elective" brain
surgery to have some major complication or infection be the result.  I could
never forgive myself.  

It's complicated.

The coaster has left the station, and I don't think we've seen the likes of this one since about a year ago.

Cameron took a bad fall at home, landing of course on his head this Wednesday. As a precaution we saw our pediatrician, he checked out ok and we went home to rest. 3 hours later he awoke in intense pain, given his high tolerance for pain I was worried but not ready to head to the ER. Until of course the pattern repeated 90 minutes later. A call to the pediatrician led us to the ER. We couldn't be certain if Cameron was suffering from a concussion or shunt complication.

Upon arrival at the ER Cameron seemed to have "come around", I spent the better part of the next hour thinking to myself "why are we here" as the triage nurse said, "you just bought yourself a CT scan". I even lamented to our neighbor before we left for the hospital I was convinced that all this pain was likely going to be sinus pressure, as Connor has been battling croup. Today, she shared with me how she was convinced I was off my rocker and stressed out because of my insistence this would all be nothing.

Soon enough Cameron validated our trip as he started to slip away just after the CT scan and prior to x-ray. He fell into a deep sleep and just as the ER attending left the room Cameron woke up and puked all over.

The ER was packed, so 3 hours into our arrival a Neurosurgery resident came to chat with me and asked "Mom, what do you think is going on" should have been my first sign, but I went on about how while these symptoms mimic past shunt issues I really bet this is sinus pain. He let me go on for about 5 minutes and then said "I think you need to come look at his scans"

I blurted out an expletive as we reviewed the scans. Surgery was discussed and it was likely could wait till Thursday.

Wouldn't you know it by the time we were admitted to 3W (midnight!) Cameron was all chatty and seemingly better. Zofran and an IV seemed to help, but we were all certain he'd revert to slipping away as he has been known to do. But not this time, he remained stable for the next 24 hours.

Friday morning Dr. Bowman (Cameron's neurosurgeon)met with us bedside, she doesn't like the size of his ventricles at all.
While she initially was thinking we'd do the surgery today or this weekend, after much discussion we all agreed to sit tight. I mean who does "elective" brain surgery, right?!?

He will need the surgery. It will involve implanting the valve and anti-siphon device in a different manner in an effort to prevent this 6 month cycle from happening. Here's hoping it works. Right now we are scheduled to see the team in just over a week for a previously scheduled MRI, rather convenient. So we were going to find all this out soon enough. Assuming Cameron remains stable till then we'll make a surgical plan at that appointment, or we'll end up back in the ER if he shows any malfunction signs. We are all crossing our fingers to get at least two more good weeks.

The name for all of this is Slit Ventricle Syndrome, which means his shunt is over draining. This is not all that common in Hydrocephalus, and treatment is complicated. Some children tolerate their ventricles being small just fine, but a small percentage have a problem. Cameron happens to fall into this category. Now that his ventricles are essentially collapsed he is at a higher risk for a true malfunction as the catheter can easily clog with choroid plexus or blood as there is little to no CSF.

Dr. Bowman is conservative and I know she'd never send us home if there were any serious risks, but we are on high alert and you can bet I'll be more neurotic than usual.

While I was truly surprised at the dramatic change in imagining from late November I shouldn't be so surprised. After our ER visit in November I was all but certain he'd need a surgery by February based on some very subtle changes he's exhibiting over the past few months.

Every night they showered Cameron (in his bed!)to prepare him for surgery and placed new IVs. Finally, last night when they couldn't get the "stick" we all agreed to just give him a break from the IV. Do you know what he says...

"I thought I was getting an IV?"

This is after they've just blown a vein. Not a tear is shed and he wants to know where his IV is?

Thanks for all the well wishes and support, we'll do our best to keep the blog updated as things develop. While in the hospital Facebook is always easier to send updates.

While this hasn't been fun and we are not looking forward to what's to come and all the worry, a dear friend shared some sage advice she heard on the same hospital floor some 23 years ago:

"I don't care how many times the surgery has to be done because he is alive and when we leave the hospital he runs and plays and gets to be a bo"y

May that always be true for Cameron.

Cameron Rocks On.

Happy New Year!
Wishing all of our "followers" time to enjoy all of life's blessings in 2012. There is not a day that I don't count our MANY blessings.

January usually weighs heavily on our family, Cameron is always due for a slew of 6 month check ups and our health insurance deductibles, out of pockets and so forth all go back to zero.

Well this January is different, sure the doctor visits don’t change but this year we don’t have the added stress of the financial woes. This is a blessing for which we will never be able to express enough gratitude.

Our blessings in friends, family and complete strangers who gave to our family through the Cameron Can event in March 2011 are many. Each one of you is special and will never be forgotten.

Despite the many obstacles Cameron faced last year the highlight was by far the creation of The Cameron Can Foundation.

As we look to 2012 and the future of the Cameron Can Foundation we are beyond excited to fulfill our mission to build a continuing legacy of care for families who fall into the gap where financial assistance through typical channels is not an option, even though they are struggling to pay mounting medical bills.

When our friends came to us with the idea of a fundraiser in 2010 I'll admit I was very nervous and very embarrassed that we had become a "charity case." Ironically back in 2006 soon after Cameron was born some of these same friends suggested a fundraiser to help us, I said “No thank you, we have insurance we’ll be fine. “At that early stage I had no idea what we were up against and I am forever grateful to these same friends for seeing a need and answering it.

Cameron Can all started with one friend with a heart of gold in Riverside, who began a campaign to help us and it took off from there with seven dear friends creating an amazing event that changed our lives forever! So I thank all of you who had their hand in this again and again. You are a true blessing to me, Matt, Cameron and Connor.

I shared with the Cameron Can Board last year we would only feel comfortable accepting the financial help if we could create a foundation to honor Cameron’s legacy and what our family has faced, because I know we are not alone.

We are blessed. And I want to be certain we carry this legacy forward, help another child, further Hydrocephalus research and give back to the hospital that is our second home, and will be for at least 15 more years.

I ask you all to Save the Date and continue to be a part of Cameron’s legacy! Join us March 15th for what promises to be another grand event. Rock On!

• PS if you have anyone who would like to become a Sponsor or donate a Silent Auction item please direct them to www.cameron-can.com