Tessa Reed Shea's Documentary: Social Butterfly

Thursday, May 19, 2011

Social Butterfly

I was a social butterfly today. I had a pretty good morning today which was change from the last few days. I only had a few episodes of coughing and scared Nana for a second when I had trouble getting my breath after coughing. Later in the morning my nurse Linda came and I now weigh 11 lbs 8 oz! My lungs still sounded congested but I am still able to cough most of the congestion up.

Then the nursing coordinator came over to meet me and asses my needs for when Daddy goes back to work. She was very nice and said she had a few prospects for nurses. Hopefully I get to meet some of them in the next few weeks.

We barely had time for lunch and then my therapists came. We did some physical therapy and I was very calm while Siobhan worked my arms and legs. They also they gave us a DVD to watch for more massage techniques - can't wait to try those out!

After they left I was so worn out and have been sleeping every since. Hopefully I can still sleep tonight. Good night everyone.

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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.