Tessa Reed Shea's Documentary: Uncle P

Friday, June 17, 2011

Uncle P

I spent the day with my nurse Ines today and had a pretty good day. I got a bath this morning which made me so relaxed I fell asleep! Then Ines dressed me in a pretty dress from my neighbors Celia and Isabel. I have lots of cute summer clothes that I can't wait to wear.

Brody had to stay home from school today but he was feeling better so he Daddy and Uncle Pat went to the zoo in the morning. I wish I could go to the zoo too, but I still have lots of trouble leaving the house. I don't like to ride in my car seat when I'm having seizures and I really don't like moving around a lot. I think all the movements make me very dizzy and I then have a hard time keeping my food down. Mommy and Daddy take me on short walks around the neighborhood but find it is best if I stay close to home.

Uncle Pat and I got to hang out today outside with my brother. It was drizzling off and on this afternoon so we didn't get to sit outside too long.

It is time for bed soon but I'm getting some late night snuggle time with Uncle P before I hit the sack!

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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.