Tessa Reed Shea's Documentary: Friday the 13th wasn't so bad

Friday, May 13, 2011

Friday the 13th wasn't so bad

Today was a pretty fun day. Mommy had off today so she got to stay home with me! My nurse Linda came by to check on me and weight me. I now weigh 11 lbs and 4 oz:) I'm not gaining weight at the rate that most doctors would like me to, but she was happy I had gained weight. I can only get in about 5 feedings a day because I can only handle slow feedings through my feeding tube and I have too many seizures at night to handle eating safely.

So I got to snuggle with Nana a bunch of times today. This afternoon she fed me.

Then Nana sat and read a book to Finnegan and he said "read it again Nana!".

After my big brother Brody came home from school, he Mommy and Daddy went to go see a Colorado Rockies baseball game. That meant I got to have lots more snuggle time with Nana. I was pretty good for her until around 9pm, when I started to get congested and my seizures got a bit worse. Luckily Mommy and Daddy were already on their way home from the game. Now I am resting comfortably on Daddy watching movies!

1 comment:

CarynMay 14, 2011 at 6:11 AM
Nana's hair looks lovely!
ReplyDelete
Replies

Add comment

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.