Tessa Reed Shea's Documentary: Paparazzi

Sunday, April 24, 2011

Paparazzi

I had a pretty good sleep last night. I woke up around 5 am to eat and got to spend the rest of the morning snuggling on Mommy. Nana an Pop-Pop Reed left really early this morning, but luckily I was awake and able to say goodbye to them. Thank you for visiting me. I love you both and will miss you.

Later in the morning, a photographer named Julie Harris came over to take family pictures. It was a lot of fun getting all dressed up and spending lots of time with my big brother Brody, Mommy and Daddy. My furry brother Finnegan even snuck in a few shots. We don't have Julie's photos back yet, but Mommy took a few of her own.....

Big brother Brody was strutting his stuff for the camera:-)

Then we ate lots of easter candy and my brother ran around like a maniac (nothing new!). Thank you Aunt Kathy for the yummy cookies, candy and books.

My brother and I watched Peter Cottontail from Auntie Dina. I even caught Mommy and Daddy watching it too:-) Happy Easter everyone.

3 comments:

Nana & Pop Pop ReedApril 25, 2011 at 6:05 AM
Can't wait to see the family photos. Brody, you look so handsome and Tessa you are just adorable. We enjoyed our visit and hope to come again soon. Love to all, Nana & Pop Pop
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UnknownApril 25, 2011 at 1:15 PM
Jen,

I cannot believe what a little angel she is...I know you love her so much. Me and Dina I think are trying to come at the end of May!
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Tessa SheaApril 25, 2011 at 7:23 PM
I would LOVE to meet Mommy's girls!
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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.