Tessa Reed Shea's Documentary: Hooray for Friday!

Friday, April 29, 2011

Hooray for Friday!

I had a busy day today! My physical therapist Siobhan and occupational therapist Neala came by today and we worked on massage techniques to calm me down. I LOVED it! I relaxed while Mommy and Siobhan massaged me with special oil. I can't wait to do this again:)

Then, it was a pretty nice day, so Mommy, Daddy, Uncle John and I decided to walk to the Perk Hill coffee shop. It was sunny and a bit windy. I got to wear my Scarlett O'Hara hat which is very dramatic....loved the attention.

Also, Mommy and Daddy got the files from our photo shoot with Julie Harris. Here are a few of Mommy's favorites - and yes, Mommy had a hard time picking her favorites. But with an adorable subject like me, do you blame her?

You can see all 185 photos by logging onto Pictage at:
http://www.pictage.com/client/event.do?event=1033599

5 comments:

BrandiApril 30, 2011 at 8:46 AM
We love your pictures! Thank you for giving us a glimpse of your story it will live in our hearts forever. Gary, Brandi & Girls
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CarynApril 30, 2011 at 11:33 AM
You picked some good ones, we love them all!
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Nancy and Frank VarioApril 30, 2011 at 12:01 PM
Tessa, you and your brother Brody's photo is soooo special. It is a true representation of love, between the two of you and between Mommy, Daddy and their children. We loved being able to share in such a beautiful time in your lives. Thank you for sharing your story. Wish we could stop by and visit, but this feels as if we did. We are so proud of you Jennifer (and Dan, of course, though we haven't met). Keep up the great job. Love, your childhood neighbors, Nancy and Frank
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Tessa SheaApril 30, 2011 at 12:29 PM
Thank you all! I love that everyone is enjoying my blog-I look forward to sharing my pictures and story each day.

Mommy told me to tell Aunt Nancy and Uncle Frankfurter hi for her!
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MegMay 1, 2011 at 2:27 PM
Quit making me cry! Those pictures are so beautiful and touching!!!
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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.