Thursday, September 4, 2014

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 3rd Cameron was sick, but on May 21st, 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.

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