Tessa Reed Shea's Documentary: Speedlight

Wednesday, December 28, 2011

Speedlight

I think Mommy is still recovering from all the Christmas festivities because said she was too tired to do a blog post with me last night! I've had a quieter than normal few days but I think I am trying to sleep as much as I can because I am trying to fight off a fever. The last two or three days I have went from having a low grade fever to almost 102F today. Tylenol and Motrin have been helping keep the fever down but we did have to use some cold rags today in addition to the fever reducers.

I have also been enjoying my Christmas presents. I got lots of snuggly blankets and stuffed animals but I also got lots of new musical toys. Daddy bought more batteries so now I have my new musical/lights mobile for my crib. It plays all kinds of music - my favorite is lullaby's - and it even puts on a light show which my brother really enjoys! Mommy has been figuring out how to use her new speedlight (fancy camera flash) without reading the manual....maybe she will get time for that this weekend. For now, we will experiment.

I also got a beautiful candle angel that comes on every day at 5pm! It is especially pretty if we turn out all the lights. I even got a new girly crib skirt and crib sheet but Mommy just did laundry so we will take a picture of that later this week.

Hopefully my angel helps keep me strong so I can fight off this illness. I am having labored breathing right now but still managing to stay asleep.

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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.