Tessa Reed Shea's Documentary: Help has arrived!

Thursday, May 26, 2011

Help has arrived!

This morning Marsha came to hang out with me. She sat with me and fed me while Daddy took Brody to school. Then Daddy made some phone calls and did some stuff around the house including taking a shower which is hard for him to fit in each day! She will be coming back again next week to help out:)

We are still working on getting me a full time nurse and hopefully will get to meet some next week:) My therapist was supposed to come today but had to reschedule for tomorrow. I had some free time this afternoon with Daddy and he took some pictures of Finnegan and I. Finny was cuddling up with my pink doggy - I think he thought she was cute!

Then Mommy and Brody came home and we all played outside for a while. It was pretty warm today but it is really going to be nice the next few days and I can't wait to spend more time outside. Then we all sat down to watch the finale of American Idol (my brother LOVES it...). I'm still mad that Haley got kicked off so I decided to sleep on Mommy instead of watching the country singers which I found to be a bit boring!

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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.