Tessa Reed Shea's Documentary: Busy Friday

Friday, April 15, 2011

Busy Friday

First off, Mommy would just like to thank everyone who has been following the blog and sending wonderful emails, calling and posting comments. She reminds me all the time how many people love me and are thinking of me and praying for me.

This morning was non-stop visitors:) First, my new nurse from Hospice, Linda came by to meet me for the first time and she was very nice. Then the social worker came by to introduce herself and as soon as she left, my physical therapist Siobhan and occupational therapist Neala arrived. We caught up on everything that has happened and then we did some stretching and relaxation exercises. Next week we will work on massage techniques (whoo-hoo!!!) and aroma therapies (double whoo-hoo!!).

Then Mommy and big brother Brody came home and the house got LOUD! Brody wanted to hold me for the first time which was so much fun - I really loved snuggling with him.

Then, uncle Adam stopped by to pick up Daddy who, as Mommy says, has the night off! I hadn't seen Uncle Adam in a few weeks, so it was nice to catch up again:-)

Needless to say, I am exhausted. Nana held and fed me while Mommy put Brody to bet. Now I am snoozing in Mommy's arms and ready to hit the sack!

Finally a shout out to my Aunt Kathy - Happy Birthday!!! I love you!

1 comment:

UnknownApril 15, 2011 at 11:15 PM
What a busy, busy day... Capping it off being held by big brother sounds like lots of FUN! We're all anxious to meet you, Tessa, especially Abby. She thinks you look very cute in your picture. Abby also wants to play with Brody, and take him to the aquarium if its alright with his mommy and daddy. We can't wait to meet you very soon!
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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.