Tessa Reed Shea's Documentary: Worn Out

Wednesday, July 20, 2011

Worn Out

I had a really good day with Tiffany today. My therapists Siobhan and Neala stopped by to teach Tiffany how to do joint compressions to give my joints a little workout. I was sleeping when they arrived and pretty much slept right through the therapy session, but I think it wore me out because I have been really sleepy the rest of the day. Tomorrow we are going to watch the baby massage video together and hopefully I will get a little massage. We have been enjoying more yummy meals from all of Daddy's co-workers at Tetra Tech! Thank you all for the super yummy dishes the last few weeks.

I was running a little fever this afternoon but it is gone now. I am all done with my last feeding of the night and I am going to be hitting the sack soon.

My night nurse Paula is off tonight and will only be working every other Wednesday. We are working on getting another Wednesday nurse and someone on Friday or Saturday night....

My increased dose of Valium seems to be doing the trick. I have been much calmer the last few days and having easier nights.

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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.