Tessa Reed Shea's Documentary: Bath Time!

Wednesday, May 4, 2011

Bath Time!

Mommy missed another post yesterday...she apologized to me all day! So I have had a few good nights in a row and my higher dose of Valium at night seems to be doing the trick:-) I think Mommy, Daddy and I have all figured out that I sleep best in the boppy in bed and very close to Mommy and Daddy. That way, they are right there if I need them. Even Finnegan, my furry brother, tries to sleep with all of us and Mommy has to keep pushing him off my feet!

Today was a pretty quiet day. Daddy and Uncle John gave me a nice bath this morning. I don't always love baths (unless Mommy or Daddy takes one with me) but I was pretty comfortable today. Daddy kept the water nice and warm and filled the tub up really high.

Then I got to hang out with Uncle John while Daddy went to get his hair cut. We had some good snuggle time which I need to take advantage of because he will go back home on Friday:-(

I had a hard time after dinner trying to calm down. I was making lots of grunting noises and having seizures. I just took my nighttime medicines including the Valium so hopefully I start to feel sleepy soon.

1 comment:

CarynMay 4, 2011 at 9:53 PM
Such nice pics your mom takes of you baby girl! You are getting big!
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.