Tessa Reed Shea's Documentary: Thank Gosh it is Friday!

Friday, May 6, 2011

Thank Gosh it is Friday!

I had another pretty good night last night. I slept a bit longer this morning because Mommy and Daddy gave me my Valium a little later and I ended up sleeping in:) My brother Brody was off school today so the house was a bit more chaotic than normal. Sometime loud noises bother me, so Uncle John decided to take Brody to the bakery down the street so I could nap this morning. From the picture below, I bet he didn't mind!

I was running an elevated temperature this afternoon. Daddy kept a cool washcloth on my forehead for a while and I was able to bring my temperature down on my own. Then Mommy came home from work early to cuddle with me while Daddy took Uncle John to the airport. He had to head back to LA. I will miss having your here with me Uncle John - I love you!

Then Mommy's friend Gay came by to watch me while Mommy and Daddy went out to dinner. I even got to share my evening #2 with her. I normally save that for Mommy and Daddy, but she was being so much fun I thought I would do it for her:) Thank you for watching me Gay! Mommy and Daddy don't get many nights out so I know they really appreciate you taking care of me.

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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.