Tessa Reed Shea's Documentary: Better

Saturday, December 17, 2011

Better

My new medicine seems to be helping me overall. I am still having some uncomfortable awake times and a hard time coughing out my congestion, but these episodes now only last about 45 minutes to an hour as opposed to a few hours.

We all enjoyed a quiet night and morning today because Brody went down to Mommy's friend Gay's house to have a sleep over with her grandson Morrison. So, the house was super quiet and I got some special time with my nurses Ines and Darlene. Mommy and Daddy had a night out on the town which they don't get too often so it was fun for everyone.

I was quiet and restful for most of today. Brody came home and got to snuggle with Mommy and my furry brother Finnegan while watching some loud lion show - it's big cat week on the national geographic channel. That is Brody's favorite:-)

This evening Daddy and Brody braved the cold and headed out to the post office to mail our Christmas cards. About an hour later (literally), they called Mommy to tell her they are in the mail. Hopefully they get to the houses by Christmas. Mommy's computer crashing has delayed the whole process and that is why we have not been able to post evernight the last few weeks.

I am getting some great Mommy time and have decided to take another nap while I finish up my dinner. Only 8 days until Christmas and I can't wait.

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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.