Tessa Reed Shea's Documentary: The sun is back!

Monday, May 16, 2011

The sun is back!

I've had some pretty good night sleeps recently. I no longer use my boppy but I am still sleeping in Mommy and Daddy's bed. It just makes me feel good to have them close by and they are right there if I need them. I have been sleeping in late the past few days too which is nice:)

My Hospice nurse Linda came today. She said my lungs sounded pretty clear and we didn't have to make any changes to my medicines. I have been awake a lot today and enjoying lots of snuggle time with Daddy and Nana. Nana even watched me so Daddy could go and have lunch downtown with Mommy. My seizures are making me have some more spasms these days and most the time I am awake I am having trouble with seizures and struggle to get comfortable.

Then Mommy and Brody got home and we all had dinner together - Mommy fed me while we ate.

The sun was out most the day today but it was still too chilly for me to go outside. Hopefully it will be nice tomorrow and I can sunbath with Nana. I think I may get a bath tomorrow too:)

1 comment:

Nancy and Frank VarioMay 17, 2011 at 7:34 AM
Tessa, you must tell Mommy and Nana Reed that they look like sisters in this photo. We are so happy that Nana Reed is there to love you while Mommy, Daddy and Brody get to enjoy some "off time" together. We are all praying for all of you to stay strong, enjoy each other and have plenty of joy being a family. Have Nana Reed give you big kisses and hugs from us. Oh, by the way, our Max and Maddy also send their Hellos to your kitty Finnegan. Love, Aunt Nancy and Uncle Frank (p.s., still having trouble sending you our love with this blog, since we just typed a previous note and when we previewed it, clicked the close box, IT DISAPPEARED!!!!-we hope this one gets through)
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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.