Tessa Reed Shea's Documentary: Mohawk

Thursday, December 8, 2011

Mohawk

Mommy's computer broke so we were not able to post last night:-( I thought Apple's were not supposed to break....We are hoping that all our family pictures were not lost. Mommy has an appointment at the Apple store tomorrow and are keeping our finger's crossed.

Well, I had a pretty rough night last night and day today. My medincines don't seem to be keeping my seizures at bay anymore and we are going to talk to Dr. Gien tonight to see what we need to do. I have been having episodes last a few hours where my seizures are very active and it just escalates my respiratory distress and my hear rate is super high. We try and do all the tricks in our bag and give me all the medications I am allowed to take and nothing seems to help.

My nurse Tiffany sent Mommy the picture below. I took my bath this morning (it wase a messy one since I decided to poop in the tub!) and fell asleep before I could get a hair brush! We all thought my mohawk was cute:-)

1 comment:

CarynDecember 9, 2011 at 8:27 AM
Rock out with your hawk out girl! :)
ReplyDelete
Replies

Add comment

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.