Pediatric Neurology & More Specialties!

Cameron had his check up with Dr. Richard Morse at Dartmouth on Monday afternoon. We left my office just after the winners of the Boston Marathon crossed the finish line! Whoo!

I snuck some pictures of him during his appointment.

The giant star on his chest was from a contest we had at work. He obv had to have it!

He's 43.5 inches tall and 41 pounds -- he's grown so much in the past 6 months!

He's kind of a champ at holding still to get his blood pressure read.

Dr. Morse started the appointment the same as he always does: "How's everything going?" I explained that since we were last there, Cameron went the longest stretch that he has gone without a seizure -- 5 months and 4 days. Dr. Morse was thrilled, especially when we mentioned that Cameron had been (along with every other 4-year-old preschooler) sick with colds on-and-off all winter. He reviewed his most recent labs (from Dec. 31), which showed his main seizure med to be right in the middle of "therapeutic level," which was a surprise for us all because Cam has always had his levels above therapeutic level to keep the seizures at bay. His other med was actually below therapeutic level. All great things when we consider that those labs were drawn 4 months ago and Cameron only has had one seizure since that time. Dr. Morse suggested we continue his dosage where it is, unless he has another seizure, especially considering he MAY have had a fever prior to the last one.

Yoga for Kids and Cross-Training

For me, yoga always had this sort of hippie, free-spirited, twist-your-body-in-weird-ways-on-the-beach vibe to it, that I never felt like I could truly relate to. Oddly enough, my newly-found interest in yoga actually came from Cameron. He practices yoga every Wednesday at school, in addition to his physical therapy. He has been coming home and telling us about "the yoga" that he's learned since he started preschool last year. When the opportunity arose for me to join some friends at a $5 Community Yoga class over this long, harsh winter, I took the dive!  

Timehop, Races and The Boston Marathon

Timehop is a wonderful thing! Those of you with Facebook, Instagram or Twitter have probably seen the glorious "8 YEARS AGO" photos of silly college messes, or the "2 YEARS AGO" newborn photos of your friend's now two year old baby. On Sunday, my Timehop reminded me that "4 YEARS AGO" Shawn and I got engaged! April 12, 2011 was a day that stood out in my mind for the two years leading up to our wedding, because it was the anniversary of our engagement, but with so many other dates to remember, this one sort of left my memory. My Timehop has been empty 4 years ago over the past few days, but April 13, 2011 is just about as equally a life-changing date as April 12th was.

Dreams & Updates

I'll be honest, running a marathon was never a dream of mine. It's never been on my proverbial bucket list and I totally skipped more than one Whitcomb Loop 4 miler during cross country skiing season in high school (sorry Mr. Streeter!). But, I have learned, in my 27 wise and experienced (haha) years, that life will undoubtedly throw some seriously mind-altering events your way. Such events may lead you to an earlier-than-expected start at parenthood, meeting the love of your life at the college you initially avoided, and maybe finding a release in just the place you hid from 11 years ago. 

So here I am. Registered for my first marathon. 

World Epilepsy Day - Purple Day 2015!

We only learned of Purple Day last year, which I find kind of telling when I realize where we were two and three years ago. 

I think people feel more comfortable spreading awareness and advocating for a disease, event, location, tragedy, etc. after you've gone through it or experienced it first hand, maybe even reaped the benefits of some of the organizations that support people in similar situations. As with Cameron's epilepsy, we really kept to ourselves and to our close family and friends in the first few years of his life, as we stumbled through the journey that is Pediatric Neurology. It was only just before and after his surgery, when we started to see improvements in his seizures, that I felt like we belonged to a bigger community. I think sometimes when you're going through the motions, through the tests, emergencies and appointments that you feel like your experience is your own and no one can relate.  Its only once you have come out of the experience (and maybe you're still in it) that you realize you were never alone. I think that's where the feeling of necessity to spread awareness comes from - wanting to make sure those people who all feel alone right now, know that they aren't and to support those that supported you in the hardest, most alone times. 

Cameron and I dressed in our purple this morning - the little punk wouldn't smile for me. So, what does every good mother do? Bite his ear! Not pictured is Shawn, who did sport his purple today too!

One year later

It's been a year.
A whole year!
As a kid, a year was an eternity. Now as an adult, a year feels like a week and a day goes by with a blink. I still feel, with my whole body, the anxiety that I felt on October 30, 2013. This time last year, we were each sleeping in our own separate twin beds at David's House waiting for the alarm to ring to start the day of Cameron's brain surgery.

He had his mohawk. He had his Red Sox blanket and his comfy monster jammies. We had been overwhelmingly supported by our friends and family leading up to, and preparing us for the coming weeks. We had no idea what to expect that night, and that was terrifying.
It's pretty crazy how it all unfolded, honestly. Cameron loves looking at the scrapbook that I made, but he doesn't remember anything about those days at CHaD, in the PICU or how incredible it felt when he got to come home...to play basketball outside...two days after having brain surgery!

While we cannot totally celebrate Cameron being seizure-free one year later, we CAN celebrate that he is complex-partial seizure-free! Cameron had always had two types of seizures, complex-partial seizures and focal-motor seizures. Since his surgery, he has not had even ONE complex-partial seizure. This is the type that he would have frequently. It would slow him down for 30 seconds to 1 minute, he'd barely breath and got super hot and sweaty. The focal-motor seizures are more like what the average person thinks of when you hear someone had a seizure. It's not a grand mal seizure, but he loses consciousness and the right side of his body twitches. In our experience, these seizures only stop with the use of his emergency medication. We knew going into the surgery that there was a 50/50 chance it would "cure" his epilepsy, so the fact that it has cured one of the types of seizures, is fantastic!

In the last year, Cameron has had 6 focal-motor seizures. That sounds like so few, for a kid who could have 6 seizures in a day before his surgery, but it is more focal-motor seizures than he has had in his life before one year ago. These seizures are more dangerous and have no warning, unlike the complex-partial siezures, where he'd started to be able to tell us he didn't feel good before it happened. Two of them have happened at school, most recently this past Monday, Oct 27th. Cam was playing outside and fell over in the sandbox. Luckily, Shawn's mom, Cameron's Grandma, was already at school to pick him up and witnessed him fall over. She yelled to the teachers who called the nurse and they administered his emergency med on the playground.
I had Shawn take a picture of him sleeping on the couch Monday evening. I felt like the image of him sleeping on the couch with his Superman cape on, was so powerful after spending the previous day at CHaD celebrating the CHaD HERO event. My little Superhero...

Cameron had an appointment with Dr. Morse, his Pediatric Neurologist, in early September. Ironically, Cam had a seizure that morning - the first of the two that have happened at school. Dr. Morse decided to increase one of his two meds and wait for a "trend" before we do anything else. This time around, after Monday's occurrence, Dr. Morse decided he wants to have Cam's med levels checked, so we will be making a trip to the lab this week to have his blood drawn.

So, one year later, here we are.  I took this picture while he was laying across my lap last night. You can see that the scar has healed really nicely, for the most part. He is very aware of the area by his ear, as I think it's still pretty sensitive.

I still can't believe its been a year. 

I really wanted to thank everyone who donated to support CHaD, leading up to the CHaD HERO race this past Sunday! I ended up raising $675, which was just a tiny piece of the almost $704,000 and counting, that CHaD is still collecting as part of the CHaD HERO. I got to run through the finish with Cameron, which was so special. When we got through the finisher's chute, he looked up at me and said "Did I help you run the fastest you could be??" He was so proud of himself, and I was so happy to hold his hand as we crossed the finish line together. 

So, don't worry, 'bout a thing. Cause every little thing, is gonna be alright.

As Summer comes to an end...

I’ve wanted to write a post as an update for a while, but hadn’t figured out what exactly to say because I know there is some sense of disappointment that is hard to hide, while still expressing our gratefulness.

Cameron really cannot be considered “seizure-free” at this point. Since my last post in the beginning of April, Cam had two more focal-motor seizures, which are the bad ones, but the only kind he has continued to have. We’re just over the 10 month mark post-surgery and he has now had 4 bad seizures. That’s not bad considering where we were a year ago, but still a huge cause of anxiety for us.

On May 3^rd Cameron was sick, but on May 21^st, he was not sick at all – not even a stuffy nose, but he had a seizure. After that, we talked to his doctor who decided the best thing to do would be to start him on another supplemental medication, rather than continue to increase the dose of his current med, which was not controlling the seizures on its own. Since starting the new med (knock on wood) he has not had another seizure. 

Meanwhile, we took a big step at the beginning of the summer and decided to have Cam's hair CUT, like REALLY cut. We had been letting it grow out with occasional trims to cover up his scar while it healed, but his mop was just TOO much to control and so ridiculous! ;) He basically gained about 4 years after that haircut!

 Cam got to go to the ocean and camping for the first time this summer, and loved both!

With the new medicine he's on, they had warned us that his body won't sweat as much, so he could become very easily overheated. We've had to be extra cautious about his fluid intake this summer and how long he's been running around outside. His face gets beat red and so, so hot and its hard to cool him off. Several times at the beginning of summer we had to strip him down and put cold clothes on his neck (which every 3 year old LOVES...not!) to chill his body down. Luckily, it never caused a seizure, which is a problem he used to have with the heat. It was always a trigger for him.

As Summer ends and Fall begins, we start a new school year for Mr. Cameron! He's going into his second year of Preschool! Kindergarten next year! Can you believe it!?! I saw this article from The Huffington Post today and wanted to share it - if you have time to read, check out this honest account from a mother of an 11 year old girl with epilepsy, and the struggles that not only her daughter has, but that her and her husband, and also teachers and friends that care for her daily have. An interesting and insightful look.

Here is Cam on his first day this year - as you can see, his scar is still visible, and likely will stay much like it is now. He is aware of it, and we don't hide it. He occasionally asks about it and we're honest and talk about his surgery when he asks. I don't think he remembers anything about the actual surgery. 

As the time gets closer, I wanted to share again that I will be running in the CHaD HERO Half Marathon on October 26th, to ring in the one year mark from Cameron's surgery! 

100% of the funds raised will support the care children receive at any of the CHaD locations across the region. Did you know that each year over 60,000 children and adolescents are cared for by CHaD?

"Childrens Hospital at Dartmouth (CHaD) is one of only 205 nationally recognized children's hospitals and New Hampshire's only comprehensive, full-service children's hospital providing an extended system of care and advanced pediatric services." 

"In the two decades since CHaD’s inpatient unit first opened in Lebanon, NH, health care has evolved dramatically, as have best practices for caring for children. Yet, the unit’s physical layout and design have remained largely the same. Caregivers working on CHaD’s inpatient unit—and most importantly patients and families staying on the unit—deserve a physical environment that supports the very best care."

This year the CHaD HERO will contribute half of the total funds raised to the CHaD Inpatient Project. I'm so excited to be able to give back and support the staff that has given so much to our family over the past three and a half years! 

Please consider donating on Cameron's behalf to CHaD to provide monetary assistance to an organization that continues to provide the highest quality of care to the children in the state.
http://chad.donordrive.com/participant/cyriouslycam