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

Wednesday, September 1, 2010

Kennedy's Surgery July 21, 2010

The reason I haven't posted is because I have been waiting for good news to post. True everyday is "good news" and I don't want to pretend that I don't know as such.

This post will be long (warning)... I will try to summarize what has taken place in the last 6 weeks of Kennedy's amazing life.

Checking in to Hershey Medical Center

Surgery? Ohhhh hand me the Spongebob Stickers~

"Moms aren't allowed in the operating room"....uhhh where does it look like I'm going?!

I HAVE to wear my shoes!!!!!!!!!!
False happiness

Kennedy in her first the PACU
First time with her head wrap off and out of the bed!
"Seriously... go home? I can hardly move"
Sneaking a picture

Doped up and eating potatoes in the hospital caf
Kay and her PT Amanda.
Sitting up for the first time!!!

Okay ...time to go home!

Monday, July 5, 2010

The Summer of Memories

I have been taking Kennedy all across the East Coast in an attempt to give her a million new memories from this Summer. There is a great chance that she'll look back on this Summer and remember her surgery, but there will be a picture montage of a fantastically, vibrant, alive time.

Here are some photos!

Wednesday, June 23, 2010

Thought my Spine was Fine....hmmmm we had the four hour MRI on Kennedy's spine. And NO there wasn't any tethered cord, or syromelogia...but we did find cervical stenosis. She is only 5! Geez.So we will do the spinal surgery at the same time as the brain surgery.

So, she will be having a subocciptal craniectomy and a cervical lamenictomy on July 21st... exactly 7 days after her 6th birthday. Am I scared? Absolutely. Has everything in my life changed now? Yes it has.

We have seem some friends leave our lives. We have seen strangers be open and kind and loving... lending a shoulder whenever they could.

As the time draws closer, I will post video clips/pictures of the procedure, but for now I can't look at them without falling apart. I have been having some really rough days. I decided to plant my feet firmly on the ground, get some people out of my life, and focus ONLY on what's important in my life.

I will post some funny pictures about Kennedy soon!

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....