Tessa Reed Shea's Documentary: Hope!

Saturday, May 14, 2011

Hope!

It was a rainy dreary day today. My big brother slept in until 8:30 which was really nice and then Mommy and Nana took Brody shopping while I slept in a bit with Daddy. Then I was awake for the rest of the morning so Daddy gave me some Ativan to keep me calm.

Then this afternoon I got a package!! My Mommy's Aunt Mar, my Great Aunt, sent me a beautiful blanket called a prayer blanket made in Hope, NJ. It is made with squares of material from parishioners from Great Aunt Mar's church and they all said prayers for each square before they were sewn into a blanket. Then the Priest blessed the blanket. I love how warm and cuddly the blanket is - and of course the colors are also beautiful. Thank you Great Aunt Mar!

Tonight I get to hang out with Nana and Mommy while Daddy gets to enjoy a night out with one of his friends.

1 comment:

UnknownMay 16, 2011 at 5:53 PM
what an awesome idea for a quilt! so special to know that so many people are thinking of your family.
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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.