Tessa Reed Shea's Documentary: Joy:)

Monday, June 13, 2011

Joy:)

So my new nurse Joy started today. She will be taking care of me three days a week and we got along very well. Daddy had a busy morning trying to show her the ropes and getting Brody ready for school but it all worked out ok. I was pretty good and only spit up a little bit during my afternoon feeding.

My Valium seemed to work well for me today except for a small episode this morning when I needed my hyocyamine drops to help calm me down. I like that the Valium keeps me from getting anxious during my seizures but it is making me very weak and I don't hold me head up like I used to. I'm just very loosey-goosey as Mommy says.

Daddy is feeding me now for the 1st time today and I am having a tough time. I keep spitting up and Daddy is having to suction me a lot:-( Hopefully I can finish without bringing my whole meal back up.

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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.