Tessa Reed Shea's Documentary: Fall is in the air

Sunday, October 23, 2011

Fall is in the air

My night was typical...up a few times with seizures and taking a half hour or so to fall back asleep. I got to spend all morning and a majority of the afternoon with Daddy while Mommy, Aunt Kathy & Brody went to Anderson Farms to pick pumpkins and hang out.

My brother Brody brought me home a beautiful pumpkin but we didn't get a chance to carve it...maybe next weekend! After everyone got home, Aunt Kathy watched me while Mommy, Daddy and Brody went to celebrate Celia and Isabel's birthday! I was a really good girl for Aunt Kathy and didn't give her too much trouble. They didn't stay out too long.

Once everyone got back from the party we made some dinner. I was up and down this evening and it seemed like I was always trying to cough up some congestion. I coughed up some brown stuff which made Mommy and Daddy a little nervous. I've had so much drool recently that it has been hard to keep the tape on my face to hold down my NG tube. It was getting pretty loose so we decided to to change the tube and noticed a brown discoloration on the bottom of my tube...we will have to check that out with the doctor tomorrow.

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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.