Tessa Reed Shea's Documentary: Who said Sunday is for Resting?

Sunday, April 17, 2011

Who said Sunday is for Resting?

It was a busy day today! I had a pretty tough night last night. It took me a long time to go to sleep and had to sleep in Daddy's arms all night. I normally take Ativan when Mommy and Daddy can't get me to calm down, but it doesn't seem to be working all the time. So, tonight I am going to try Valium and hopefully that we let me (and Mommy and Daddy) get some rest.

I got to stay home with Nana Shea while Mommy and Daddy went with my big brother Brody to get a bike (see below).

Then, the Taylors (Brian, Teresa and Seth) stopped by to hold me. They also brought some very yummy Veggie Lasagna which I will get to enjoy later!! And yes Brian, Mommy said it was very yummy:-) They also brought me a cute shirt which I will show off on another day. Thank you for holding me Teresa. I loved snuggling with you!

Then, I got to take a long nap with Mommy on the couch. Snuggling is my favorite thing!

We will chat again tomorrow - good night!

1 comment:

UnknownApril 18, 2011 at 5:41 PM
I love all the snuggling photos. It's so sweet.

Bike riding!?! Yeah, Brody! It looks like you're going for a balance bike type approach... if that's the case, it really worked for Jackson. We kept him on the balance bike for about a year. He started riding a normal bike last fall. Fun stuff. We'll have to meet at the park with the kids sometime!
~ Nickie
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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.