Tessa Reed Shea's Documentary

Sunday, November 20, 2011

Mommy and Daddy talked to Dr. Gien yesterday and we decided on another drug to try since I've been having lots of trouble with my lower dose of hyocyamine. The problem is this drug will not be available until Tuesday at the earliest, so we decided just to go ahead and keep giving me the higher dose of hyocyamine with caution.

I've been having a fever off and on the last few days so Mommy and Daddy think I'm probably getting sick which may also explain my increased secretions and seizure activity. Here I am yesterday trying to relax after a nice steam bath with Mommy and my exercises.

This morning was very busy! We took our Christmas card photos and I was a very good girl:-) My brother was so cuddly and he held me for a few of the photos. We had a tough time getting him to smile but eventually he cooperated. Mommy will keep the photos a surprise before Christmas, but keep an eye on your mailbox in December!

My fever is back tonight and I'm not feeling that great. I gave my nurse Heather a hard time on Friday so I was going to try and be a little easier on her tonight, but it isn't looking good right now.

1 comment:

Aunt KathyNovember 23, 2011 at 7:24 AM
I can't wait to see the Christmas card-you always amaze me with your awesome photography and creative ideas. It's cold out here by the mailbox, so dont keep us in suspense too long :)
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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.