Sleeping, Eating, Bath Time, & Avoiding Therapy :)
.. make custom gifts at Zazzle Hospital Feb 10, 2007
Home End of Feb 2007 Part I
Home End of Feb 2007 Part II
Hospital - Mar 8, 2007
Hospital March 2007
Hospital April 1, 2007
Sucking On My Hand - Aug 1, 2007
Evil Red Ball Workout - Aug 27, 2007
Funky Movement - Sept 07
Music
Baby Einstein, Red Hot Chili Peppers (especially Dani California), The Corrs for bedtime, anything Mom wants me to listen to.
Movies
I laughed during Snakes on a Plane but didn't get to really see it - "Snakes on crack" really got me rolling! The last movie I saw was Let's Go to Prison. Boy, Mom and Dad had me watch some really weird things!
Television
Dora The Explorer, SpongeBob, Backyardigans, Go, Diego, Go, Oswald, Wonder Pets, Wow! Wow! Wubbzy!, Blues Clues, Little Bill, and The Adventures of Jimmy Neutron, Boy Genius
Books
My First Colors Board Book (red is the coolest); The Very Hungry Caterpillar; Dr. Seuss; Goodnight Moon; The Going to Bed Book; A Color of His Own; Guess How Much I Love You; Brown Bear, Brown Bear, What Do You See; Moo, Baa, La La La!; Shel Silverstein
Heroes
Mommy, Daddy, & all of the kiddo's & families going through similar things
The Big Guy is fighting the power of the mitochondria for all of the little kiddos out there just trying to get by! Posted at 5:07 AM Dec 15, 2008 view more
I had an undiagnosed syndrome that Mom & Dad will get to name and type 1 mitochondrial dysfunction. My first symptom was Nystagmus. My case looked like Cookie Monster Eyes that rolled all over the place. Later I developed cataracts (the Nystagmus was actually my first sign) and had them removed. Basically I had rapid body movements when I got upset or agitated. Due to these movements I began asperating my food and saliva into my lungs which was just compounded since I also had acid reflux. These problems caused me to have a trach put in so I could breathe and a g-tube in my tummy so I could eat. As time wore on I needed oxygen boosts because breathing became so difficult. So here are my overall things: type 1 mitochondrial disorder, undiagnosed neurological movements, cataracts, developmental delays, hypotonia, g-button with nissen due to reflux, trach due to laryngomalasia, hiatal hernia, brain atrophy, and seizures. And many think learning how to spell your name is hard! I passed away after a long and hard fight to live on December 27th, 2007 at 9:59 AM since I had an appointment at 10 AM. I will be missed by many and hope I taught people a lot while I was here for my little mission from God.
"We think mitochondrial diseases are even more common than Duchenne muscular dystrophy, which is the form of MD everyone associates with the disease," says Dr. Bruce Cohen, Chief of Pediatric Neurology at the Cleveland Clinic Foundation. "Conservative estimates are that one in 4,000 has mitochondrial disease, however it may be as common as one in 1,000."
I've been thinking of you these past few days. I remembered the day when you few wings. It's hard for me to come to your website but I often think of you.
He's home doin well still not fully over it all but over the major hump they wanted him out of the hospital before he caught anything else. Thank You for the support.
"Cheer up, take courage, do not falter ... Truth will triumph by and by ... Time all evil things will alter ... Vice and wickedness must die ... " ~Colfax Burgoyne Harman
"Develop an attitude of gratitude, and give thanks for everything that happens to you, knowing that every step forward is a step toward achieving something bigger and better than your current situation." ~Brian Tracy
"Courage is not defined by those who fought and did not fall, but by those who fought, fell and rose again." ~Unknown
Hope you've been well! Just got back my 3rd muscle biopsy results ... Mitochondrial Encephalopathy with Complex I and Complex III deficiencies. DNA sequencing of the gene will be completed in about 3 weeks.
