Tessa Reed Shea's Documentary: Busy Day

Tuesday, April 12, 2011

Busy Day

I had a rough night last night but a good day today:) Daddy started to feel the effects of the 24-hr stomach bug last night so he stayed away from Mommy and I. I had to sleep with Mommy again because I just couldn't calm down and she gave me some medicine to which made me feel a little bit better.

I felt much better (and so did Daddy) when we woke up this morning, even though Mommy was really tired. The social worker from the Butterfly program which provides palliative care for kids like me came over today to talk with Mommy and Daddy. They discussed lots of things and she gave Mommy and Daddy lots of resources. They have more meetings this week before they decide what programs will help take care of me while I am home.

We also got a surprise visit from Mommy's friend Gay which was fun. I forgot to ask Mommy to take my picture with her, but hopefully she comes back tomorrow and we can get a picture then:) Then a nice man delivered my new feeding pump!

It was a busy day and I just curled up on Daddy after enjoying my after-dinner snack. Hopefully we all get some good sleepies tonight!

1 comment:

CarynApril 13, 2011 at 3:39 PM
I love your profile pic Tessa! Pink is your color. Your Mama is a great photog!
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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.