This is our son, Kody . In 2003 he was diagnosed with Friedreich's Ataxia. We keep this site as well as a blog: www.lisachampagne-miner.blogspot.com Please take a moment to check out the blog as well as www.fortheloveofkody.blogspot.com
These are both other ways to keep up with Kody and with our family.
I guess I should begin with the fact that I always deep down knew there was something not quite medically right with Kody. Most physicians I expressed this to thought I was just an overly worried mother. But I knew I wasn't. Its hard to explain. I had tried to get approval to take him to a specialist since he was a toddler....maybe 3 y/o. Finally when he was 7 y/o was fed up and told the physicians that I was demanding a referral. Kody was first referred to see a Orthopedic Specialist. (Because his main problem was his walking or as physicians say his gait was abnormal or ataxia as it's now referred to as.) That specialist thought Kody had Cerebal Palsy or CP for short. But he referred him to a Physical Medicine doctors to be sure. (I guess like a second opinion.) The PM doctor said that it wasn't CP but that it was something. He believe something neurological. So he referred us to Dr.Gyula Acsadi a neurologist who worked at Children's Hospital of Michigan. Well he knew right away what Kody probably had. So he ran genetic screening for Friedreich's Ataxia. 3 weeks later We got a positive diagnosis for FRDA. The date was 7/27/2003. And that is where everything began. Current project we are working on is getting funding together to purchase a barrier free pool home in Florida .. if you would like to donate please do so through www.paypal.com .. our email address for that is firstname.lastname@example.org And please pass this along to help in our quest to make this all possible.
Whew Over A Year??? Sry Everyone
Sep 10, 2013 11:30amLife has been crazy busy since the last time we wrote in this journal. We moved to GA in the end of June 2013 and got a new puppy (Sadie) and are now working on establishing doctors for Kody here. We did see a cardiologist a week or so ago. This is their notations:
Now this is all fine and dandy since I do like this doctor. The clinic wants him to be evaluated by the doctors in the clinic who specialize in HCM. This is an appointment that should happen about 3 months from this month. So the appointment should be in December. Though I try to keep that month free and clear but hey you do what has to be done.
I am waiting for an email back from his CMS nurse coordinator Stacey with numbers for a Pulmonologist, Orthopedics, Pediatrics, and Neurologist. Not to mention we have to make an appointment for the new pup to see the vet.
Kody is doing his 11th grade year completely online. He is taking CHEMISTRY .... and doing quite well. He thought about quitting and just getting his GED but then changed his mind. Now time to change the picture of him on this journal ... updates updates.
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