Tessa Reed Shea's Documentary: Party Time!

Saturday, October 15, 2011

Party Time!

Mommy is tired tonight, so we are going to keep it short and sweet. I had my last dose of phenobarbital yesterday. My blood work came back showing high phenobarbital levels and therefore, we are now all sure that it wasn't working. I am back on just Valium until we decide next week what path to take.

Mommy and Daddy enjoyed a night out last night with their friends Adam and Robin to kick off Daddy's Birthday celebration, thanks to the night nurse Paula and our neighbor Meg! We all got to sleep in until 8am this morning but the late night is catching up with everyone now:)

Brody and Mommy went out to our neighbor Gavin's Birthday party at the Urban Farm. The had a blast and I got to enjoy some quiet time with Daddy. Happy Birthday Gavin!

It has been a bit of the same today. Lots of seizure episodes, respiratory distress caused by the seizures and lots of suctioning and oxygen to keep me stable. I have also been doing lots of stretching to see if that help with the pain the doctor thinks I am in from all my seizures. My therapists were here on Friday and we learned some new stretches which I am enjoying.

As usual my evening is getting difficult. I was having lots of issues after my stretching exercises and started to really get upset. **Beware, the following video could make you cry** As most of you know by now, I don't cry very often, but you can tell in this video something is really bothering me. Very little sound is coming out, but I was definitely very sad. I did, eventually settle down on Daddy.

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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.