Yesterday's doctors appointment went super well... he is impressed with my growth and development and is happy that my shunt is working well. It was a little bit sad though, because he is retiring and I probably won't get to see him again... he has taken really great care of me, and I will miss showing him how I am exceeding his expectations!!! While in Hamilton, we had lunch with a dear friend of my mom's who I had never even met... mom was so excited about it and we had a lovely afternoon (those are her words... I don't say lovely!)
Have a great weekend!
About Me
- Isaac
- I am 5 years old and I live with my Mom & Dad (Amanda & Kevin), who love me very much. When I was still in my mom's tummy, the doctors saw on an ultrasound that the ventricles in my brain were bigger than they were supposed to be and that I have a condition called hydrocephalus. Given the fact that my thumbs were clasped when I was born, and that this showed up once before in my mom's family, they thought it might be genetic. Sure enough, the test they did said I do have genetic hydrocephalus, AKA: x-linked hydrocephalus, L1 syndrome, L1CAM, CRASH syndrome, and maybe other names I haven't heard yet. This affects how the nerves in my brain and my body talk to each other, and that's why I have to work really hard at physical stuff like sitting on my own, and mental stuff like communicating. It doesn't stop me from smiling, being truly joyful & loving life, nor does it stop me from loving my parents and those close to me so much, and in turn, stealing their hearts completely.
2 comments:
Hi there! It's Holly, Cameron's mom from the L1CAM Yahoo Group. Cameron also has X-linked hydrocephalus/CRASH Syndrome. I'm so glad that you've started a blog. Isaac is adorable and I can't wait to read more about his daily life. It is so encouraging to see Isaac's beautiful smile. Our boys truly do love life - and it makes us all appreciate it more!
By the way: I have a blog as well, called Mama Pajama. It's not about Cameron exclusively (I started it to earn extra money doing ads from home) but there are tons of pictures and stories about Cameron (if you click on the Kids category in the side bar it will help weed out the ads) and his daily life.
Here is the address: www.mamapj.com
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