Tessa Reed Shea's Documentary: Sunshine

Saturday, May 21, 2011

Sunshine

It was a beautiful day here in Denver today! I had a couple rough nights. Thursday night was pretty tough on all of us. I was awake and having some bad seizures and congestions. I had Valium before I went to bed like normal but woke up around 1 am and could not go back to sleep. I was having seizures and lots of congestion. Mommy and Daddy suctioned me nose and throat out a few times and when I still couldn't calm down, they decided to give me a half dose of Ativan. That finally helped and I fell asleep around 4:30 am.

I woke up again last night but Mommy and Daddy snuggled me into bed and I was finally able to calm down. I didn't wake up again until 9:30 am and even Mommy got to sleep in with me. I spent a lot of time outside today with everyone. Mommy and Nana did some yard work while my brother Brody played in his sandbox. It was a beautiful day today and hopefully it is even nicer tomorrow.

2 comments:

DinaMay 23, 2011 at 5:07 AM
I love your outfit Tessa! ;)
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Tessa SheaMay 23, 2011 at 8:37 PM
I do too - someone really stylish must have bought that for me!! Thanx Auntie Dina! I can't wait until summer to wear my sun dresses.
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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.