Tessa Reed Shea's Documentary: Fun Saturday

Saturday, April 23, 2011

Fun Saturday

So I had a pretty good night last night. My higher dose of Valium and Ativan seem to have worked. Tonight will be the true test. I've had a little bit of trouble today with trying to keep my secretions down and I sound really gurgly. Mommy and Daddy have used my suction machine a few times today but I am also coughing/sneezing some out.

Mommy, Nana and Pop-Pop went to the mall today and bought me a pretty dress to wear for our family pictures tomorrow:) My brother Brody got a matching sweater to wear too!

We all enjoyed a fun dinner tonight and I got to snuggle with Mommy while we ate. Yummy!

Then I got some bonding time with Nana and Pop-Pop Reed before they leave tomorrow:-( I will miss you - come and visit me again soon.

3 comments:

John A.April 23, 2011 at 10:40 PM
Tessa, it looks like you are having a great time with Nana and Pop Pop Reed. I can't wait to see you in a couple of days!

Love,
Uncle john
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Tessa SheaApril 23, 2011 at 10:46 PM
I am looking forward to snuggling with you Uncle John!
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UnknownApril 24, 2011 at 2:23 PM
Tessa you are sooo beautiful. Nana has told us all about you and about what a big help your big brother Brody is in taking care of you and giving you a lot of love. We're so happy to see Nan and Pop Pop holding you. We are so happy to see you in your beautiful Christening Dress. God bless you and take care of you, Mommy and Daddy and Brody (and Finnegan, too!). Be sure to tell Mommy and Daddy that we think they are the BEST parents God could have picked for you. Love, Aunt Nancy and Uncle Frank(furter, remember Jenn?)
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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.