Tessa Reed Shea's Documentary: Van Gogh

Saturday, August 13, 2011

Van Gogh

I had a pretty good night with Daddy last night and slept in until 9am this morning! Too bad my brother was awake at 7:30... We had a quiet morning and when Brody woke up from his nap we decided to finally do the finger painting kit that Aunt Eileen and Uncle John bought us. It was lots of fun and we all got messy and created a pretty painting with our hand prints, including my furry brother Finnegan. We tried to do my hand print but I have a hard time spreading out my fingers so we used my foot print instead. I have big "flippers" just like my Mommy!

Then my brother Brody decided to go for a dip and clean off! He now loves jumping into the pool since he went swimming with Pop-Pop Reed last week. I would have gone in but the water was a little chilly and I can't stand being cold. Finnegan was worn out from getting his paw print so he decided to take a nap...what a shocker.

I stayed up late with Mommy while Daddy went to a friends party and I am now snoozing in my bassinet. I am looking forward to some sleepy time.

No comments:

Post a Comment

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.