Tessa Reed Shea's Documentary: Best Dressed!

Sunday, September 11, 2011

Best Dressed!

Feedings have been slow today but I have handled them pretty well. I have been running a low grade temp all day but have not needed any motrin or tylenol:) I am still coughing a lot and have been needing oxygen all day. My oxygen stats have been up and down and so has my liters of O2, ranging from 1.5 to 4.

I got to spend 30 minutes outside today to get some much needed Vitamin D. I took my portable oxygen tank with me and we all caught some rays. The only way my brother will let Mommy and Daddy take his picture now is if we pretend to take a picture of his car....I, on the other hand love getting my picture taken!

Mommy's friend Nickie stopped by to drop off more fashionable outfits for me from her daughter Gracie! She is responsible for lots of my cute summer dresses. Thank gosh Gracie has such an impeccable sense of style:)

I am going to try and take another small feeding after Mommy gets me all ready to snuggle into bed.

2 comments:

KrisSheaSeptember 12, 2011 at 2:22 PM
Big hugs and kisses to you all - we've been thinking of you and send all our love! Gavin, Colin & Kris & Pat
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Tessa SheaSeptember 19, 2011 at 10:21 PM
I luv you all too! Tell Uncle P we miss his gourmet meals:-)
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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.