Tessa Reed Shea's Documentary: No fever today:)

Tuesday, May 10, 2011

No fever today:)

Today was a pretty quiet day. I didn't have a fever today which was good. Daddy dressed me up today instead of the easy one-piece outfit that he really likes dressing me in. I love my heart t-shirt!

I got to go outside and lay in the grass with Daddy. I wasn't too sure about the feeling of grass, but it was something different and the sun was really warm and made me feel all snuggly.

My seizures are happening much more often so Mommy and Daddy have been giving me Ativan about 3 times a day to help keep me calm. I was pretty calm and awake most of the day but started having some trouble again at night. I was able to finish all of my 7pm feeding, but since then have been spitting up a lot of thick fluid. It has been making me so upset that I have even cried a few times and as most of you know, I don't cry that often!

Nana Reed arrives tomorrow morning and I can't wait!! I love snuggling and am so excited to get to snuggle again with Nana.

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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.