This blog is to chronicle my journey through the mystery of Chiari Malformation Type I.

Friday, April 16, 2010

How I've Been Feeling

Lots going on.... Kennedy has been getting headaches and migraines allllllll the time. Mostly everyday. Sometimes she gets these fevers out of NOWHERE of like 103.5 or 104. It's scary. But then they go away.

On a bright note, she is excited about going to her first classmate's birthday party. Normally, we don't get invited to stuff like this...hmmmm wonder why? Either way, she is so excited and happy to go.

I will post pictures tomorrow from Disney's Princesses on Ice! We had a blast. Kennedy had a major migraine and didn't want to go, but I convinced her to just go for a little while. She didn't want to stay, but I had an ice pack for her head and she stayed. It was an amazing experience.

Even through all of this, she is emerging like an amazingly strong little girl. She is fascinated with butterflies now. When she is older, she will understand why.

Saturday, April 3, 2010

Beginning of my journey with Chiari Malformation Type 1

Typical Brain goes. My mom will type this blog because I am a really slow typer. The top picture is of a typical brain. The Chiari Malformation picture is more accurate of my brain. Yes that's right people, I have "Too much Brain to contain". Although this disease (along with my Autism) means I don't have the "typical" brain, I do still have a sense of humor!

Chiari (kee-AR-ee) malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.

Side by Side Shots of a Typical Brain & a Chiari Malformation

I started complaining of headaches to my mom a few months ago. I've also pretty much been sick since I've been born. My awesomtastic mom has taken me all across the Eastern Seaboard in the past 5.5 years of my life. Well, after my mom followed her instincts about my seemingly unrelated issues...My pediatrician (who is well aware of all of my specialists) called my mom and asked her to take me for an MRI. Of course we thought nothing of it. My mom told me that I was chosen to be studied by Hershey Medical Center because I am a super smart 5 year old!

  • Been in the NICU (my disdain for doctors started riggghhhttt here)
  • They talked of shaving my head and my mom went ballistic...thus, I kept my hair and they found a vein in the bottom of my foot
  • Seen/been treated by....
  1. Metabolic Geneticist
  2. Pediatric Endorconologist
  3. Pediatric Cardiovascular Specialists
  4. Occupational Therapists
  5. Physical Therapists
  6. Speech Therapists
  7. ....and many more
So, this blog will be about my process and discovery my many Autistic querks along the way. Yes, my life and the lives of my family have changed...and we will need prayers and any donations your hearts can handle.

Until next time....