Tessa Reed Shea's Documentary: Chilly Sunday

Monday, May 2, 2011

Chilly Sunday

Mommy is a slacker! She missed another post so we will have to do two again today. I had a pretty good time the last two nights. My seizures are definitely worse at night and seem to start really bothering me around dinner time. Mommy and Daddy make sure to give me medicine before I get too worked up because once I get like that, it is really hard to calm me down.

I am now almost on my maximum dose of Valium at night of 2.3 ml and that seems to be helping. I still can't sleep far from Mommy and Daddy but I do like sleeping in the boppy as long as it is in bed with them and one of them has a hand near me. Their stinky morning breath doesn't seem to bother me that much:)

The weather was pretty chilly this weekend so I didn't get to go outside, but hopefully it will be warmer this week. Mommy didn't take a picture of me yesterday, but I asked her to share one she took when I was first born...

1 comment:

UnknownMay 2, 2011 at 12:11 PM
Jen and Dan,
This blog is really beautiful. Tessa is so fortunate to have such warm, loving parents and to be surrounded by all of her family and friends. Thinking of you every day.
Karen Thurston
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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.