Tessa Reed Shea's Documentary: Back in business

Thursday, December 22, 2011

Back in business

Mommy is finally back in business with her computer! They had to send it away and replace the screen and some other things to get it up and running again.

The big snow storm we had here in Denver must have worn me out because I slept almost the entire day! It also could have been from the three big poops I had yesterday:-) We got about 9 inches here in Denver from about 6pm last night until almost 1pm today. I stayed inside and snuggled with my nurse Tiffany while Mommy and Brody and the neighbors played in the snow. They were outside for a while making snow angels and playing around.

Mommy and Brody also worked hard this morning making our Christmas gingerbread house. It turned out beautiful and Brody kept asking when we could eat it....we will see how long the house lasts! Hopefully longer than Aunt Kathy's cookies lasted.

I also got to wear my pretty Christmas outfit today from the GA Shea's. I'm getting all ready for Santa to come visit soon!

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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.