Tessa Reed Shea's Documentary: Flip-Flopped

Sunday, December 11, 2011

Flip-Flopped

Mommy and Daddy seem to think I have my days and nights flip-flopped. The past few nights I have been awake and uncomfortable. It took me a long time to fall asleep last night and I was up having seizures and respiratory distress for most the night. Mommy gave me an early morning bath hoping that would help followed by my exercises. The steam helped clear me up and my exercises wore me out!

I barely made it through all my stretching and joint compressions I was so tired. The little massages mixed in also didn't help with me trying to stay awake. Shortly afterwards I passed out on my back so Mommy decided to let me lay on the couch this morning while she straightened up my room. I slept on the couch for a long time - my hair even dried all fuzzy so Mommy decided to take a photo.

I started to wake up a little bit ago so Mommy and Daddy moved me back to my nice clean room and I fell back asleep in my crib with my Dolly.

When I have really rough episodes I usually spend the next 12 or more hours sleeping. They say having seizures is like running a marathon. My joints get very stiff and I just get worn out that is why I love stretching and massage so much and that is why I sleep a lot, only waking up to poop, cough up congestion or have more seizures.

It is rough but I am one tough cookie! My oxygen has been dropping off rapidly the last week so Mommy and Daddy have their eye on that.

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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.