Tessa Reed Shea's Documentary: Thank you Marsha

Thursday, June 9, 2011

Thank you Marsha

Today was Marsha's last full morning with me:( Hopefully Mommy and Daddy will have her come back to help take care of me and give them a break! I really liked spending time with her and will miss her.

I had a pretty good night last night and day today. It was a light day for seizures and spit-up which is always a nice. I even slept by myself and everyone got to enjoy dinner while I slept. Mommy usually holds me and eats dinner at the same time, so this was a real treat for her.

I still didn't get a good picture with Pop Pop Shea but Daddy promised to get one tomorrow!! Mommy was able to sneak a picture, so see if you can spot Pop Pop below...

Tomorrow is going to be a VERY busy day. It will be the 1st day of full time nursing so I will meet my Friday nurse Ines for the first time. Then the Hospice doctor and my Hospice nurse Lynda will come by to check on me.

1 comment:

John A.June 9, 2011 at 11:55 PM
Glad to see the "elusive" Pop Pop Shea bringing a smile to Dan's face:) Looking forward to a photo of Tessa and him at some point Jen.....please don't disappoint:) I will call soon to check in with you guys:)

Love,
John
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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.