Tessa Reed Shea's Documentary: Merry Merry!

Sunday, December 25, 2011

Merry Merry!

I had a pretty rough day today but we still managed to have a wonderful Christmas. Brody was up early and I decided to sleep in since I was up pretty late last night. Everyone had already opened their gifts and I woke up around 11 and Brody helped me open my gifts.

Thank you for all the wonderful presents! I was up most the afternoon which made it very difficult on Mommy and Daddy to get their Christmas dinner cooked, but we got it done and everything smelled wonderful. I was still having issues after dinner so Mommy decided to give me a steam bath and Daddy lotioned me and we did my exercises together. I calmed down for a little bit, but as soon as Daddy started my feeding I woke up and am now having high heart rate and oxygen saturation issues along with lots of seizures. Let's hope I have a good evening.

I hope everyone got all the things on their wish list. Merry Christmas.

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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.