Tessa Reed Shea's Documentary: Go Eli!

Sunday, February 5, 2012

Go Eli!

I can't believe it is Sunday already....where has the weekend gone? Daddy watched me Friday night and I am definitely having breakthrough seizures between my valium and morphine doses. That is causing me to have a lot more secretions that I am needing to cough up.

Saturday I spent the morning with Mommy while Brody and Daddy ran around town and then my special babysitter Marsha came over to watch me so the family (minus Finny and I) could go out. Mommy, Daddy and Brody went to the Aquarium which I heard was pretty cool to see at night and then they had a dinner out together. Mommy watched me last night and I was a pretty good girl. Besides the increase in seizure activity and congestion, my oxygen has been a bit low all weekend and my heart rate has been higher than my normal.

Today Daddy watched me while Mommy and Brody spent the morning together. He read me a nice story....

Then Mommy and Brody went outside to do some snow building but the snow wasn't the best for making forts and slides but Finnegan thought it was pretty cool!

Then we all took a nap! Brody was in his bed, Daddy was in his bed and Mommy and I in the rocking chair. It didn't seem like it was long enough but when Brody is up, everyone is up! So Mommy decided to change me into my pjs and I got to wear my new stylish "shoe" socks from Aunt Caryn. Seems like I have a new pair for all my outfits now. Thanks Aunt Caryn!

Brody and Daddy are out watching the super bowl now and Mommy and I are hanging out at home. I have to honor my NJ roots, so GO GIANTS! Plus Eli is much cuter than Tom.

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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.