Tessa Reed Shea's Documentary: Brrrrrrrrrr

Friday, February 3, 2012

Brrrrrrrrrr

I stayed warm and cozy in my house today while I heard lots of buzz about the snow outside. I had another pretty good night that is, until early this morning when I decided to have my big poop. No one is appreciating the 5am poop wake-up call but boy does it make me feel better and then I get to sleep in:-)

I woke up this morning to about 6 inches of snow and I got to snuggle with Daddy while Mommy went out to shovel for my night nurse Beth. We got so much snow and it wasn't stopping so Brody's school was closed and he got a snow day! Poor Daddy didn't get a break and had to head to work while we stayed home and sipped hot chocolate. We had lots of appointments today but the weather put a damper on almost all of them. My therapists had to reschedule for next week and my Hospice nurse Carol just did her check-in by phone since I have been doing so well recently.

We had a quiet afternoon except for Mommy and Brody going outside to keep up with the shoveling. My day nurse Tiffany left a little early since the roads were not getting any better and the snow was still falling. When Daddy got home he had to go our and shovel again before dinner!

So I am sleeping in my bed now and have been pretty good all day. I am sounding a little more congested than the last few days and my oxygen is a little low but overall I am a million times better than almost a week ago.

I was able to watch the snow from my bed today and glad I didn't have to go outside. Daddy measured at about 7pm and we were at 14 inches of snow so far.

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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.