Tessa Reed Shea's Documentary: Shredding

Friday, November 11, 2011

Shredding

I had a really good last night and day today. My nurse Ines took great care of me while Mommy, Daddy, Brody, Uncle Eric and Jason all hit the slopes! It was a bit chaotic this morning trying to get everyone out of the house but once they were out, I was able to relax with Ines! My physical and occupation therapists came today with written instructions for all my nurses on how to keep my muscles from getting too tight.
I had just gotten my bath when they arrives so after all the exercises I was exhausted!

Then they whole crew came back and told me all about their exciting day. It was Brody's first time on skis and he was a maniac (no surprise there). He was a little scared at first, but after a run he was zooming down the mountain running over anything that got in his way!

I got to hang out with Uncle Eric tonight while Jason ready Brody books. He was trying to help get me to fall asleep.

Mommy will upload some fun video of Brody skiing tomorrow so stay tuned!

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My Story

I was born on January 18, 2011 and weighed 6lbs 14.5 oz and was 19.75" long. I was born with lots of fluid in me and no desire to suck or swallow. It wasn't until 12 hours after I was born that doctors started to worry about me. I had an MRI, CT scan and EEG and they discovered severe damage to the thalamus in my brain and diffuse white matter.

I spent a month at the Children's Hospital NICU and they sent me home with a nasal gastric (NG) tube because I still couldn't eat. I started to make a little progress drinking from a bottle at home (10 mls at a time) and then I got the flu and ended up back at the hospital.

It seemed like just after the flu I started arching much more than I had before and lost all desire to want to eat with a bottle. My arching episodes got much worse and Mommy and Daddy thought I had reflux or maybe a stomach ulcer from my NG tube. We scheduled surgery for a stomach feeding tube (G-tube), but ended up at the emergency room because I was arching so much and started to have trouble breathing.

When we checked into the hospital for the 3rd time, they gave me morphine to see if it would take away any pain I might be having from my NG tube. When that didn't stop my arching, they knew something else was wrong. They hooked me up to an EEG and found out that I was have lots of seizures, abnormal brain activity and something called hypsarrhythmia.

The doctors left the EEG on for several days to study my brain activity and my brain activity was something most doctors at the hospital don't see very often. That is when they diagnosed me with Ohtahara Syndrome and also a form of West Syndrome. The seizures are a side effect from my brain injury and my prognosis is not very good. Mommy and Daddy from the advice of some amazing doctors, have decided to bring me home to spend time with my family and experience as much love as I possible can.