A Year Passes!

I'm trying to get your caught up with my current life.  I know that so much has happened to me and that I have been through more than most my age.  I am able to do a lot of things that other babies my age can do.  I will laugh, cry, play, and give you all the love in the world.  On June 24, 2010, I celebrated my one year birthday.  My mommy and daddy were so excited to celebrate it with me.  I had cake and some ice cream and got lots of presents.  Overall, my health is good and I am a very happy baby.  I love my life and my family.  I will continue to update you on things as they happen.  Right now I am waiting to have my first shunt put it.  We are hoping that the shunt will help with some of the excess fluid in my head.  Oh, by the way I really love it when people pray for me and my family.  So keep those prayers coming.

BIGGER, BIGGER, and BIGGER

Well after my feed tube came out, I began eating very well with a bottle.  Mommy enjoyed feeding me and I just kept eating and eating.  I began growing and getting much bigger.  All the cute clothes that I had quickly became too small and I had to get a new wardrobe.  I loved getting new clothes and being spoiled.  I had many doctor appointments with specialists to make sure that I was doing well.  At first it was doom and gloom but when everyone saw how well I was and all the things I could do, it quickly changed.  My specialist began being amazed by me and was just so happy at all the things I could do.  Mommy was told by my doctor to keep track of all the wonderful things I was able to do.  At thirteen days old I was already rolling onto my side.  I just felt more comfortable on my side and so thats what I did.  I played with mommy and daddy a lot.  I really enjoy playing with Daddy the best.  He is so funny and silly and makes me laugh.  I also love the fur on his face and when he rubs his face against mine because it tickles.  I love reaching for daddy's face and rubbing my hand against that furry stuff.  My daddy thought it was great when I would rub his face.  He would always say "aww, look at her grab my face".  One day I really suprised my daddy when I pulled my face to his face and gave him a kiss.  He loved it.  My daddy is so special to me and I love him soooo much.   

Welcome Home!!!

Well it was early July 2009 when I finally got the chance to make it home.  My home was fabulous, I had a pretty bassinet and lots of clothes and toys.  Mommy and I slept mainly in the living room because I had so much medical equiptment going.  I had to be given lots of antibiotics and had to be given meds at all hours of the night.  I was given my meds through an IV and of course I had to be fed every 2-3 hours as well.  Boy did I hate my feed tube!  There is nothing like getting your food through a tube through the nose.  I allowed my mom to use the feed tube for a couple weeks, but I couldn't take it any longer so I ripped it out of my nose.  My mom told me that if I ate well using my bottle then she wouldn't put the feed tube back in.  I have now been without a feed tube for over a year, whoo hoo!  Things were very busy at my home.  I always had people coming to see me and I was always being held and kissed.  I loved all the attention though. 

As Time Goes By

To continue where we last left off, I was just diagnosed with Hydranencephaly.  I remained at Children's Hospital for a week after I was born.  Doctors didn't want me to go home right away because Mommy and daddy had to be prepared to take me home and to care for me.  Well there was a lot of preparation needed.  Mommy had to be trained on how to feed me because I was given an NJ feeding tube http://www.answers.com/topic/feeding-tube.  Mommy was pretty scared of the feeding tube but I knew she could do it.  The doctors had to get me set up with Hospice http://www.cincinnatichildrens.org/svc/alpha/s/hospice/default.htm. prior to me being discharged as well.  I was released just a little after a week of my birth.  Boy was I so excited to be going home and to start my wonderful life my with my mommy and daddy.   

My Journey Begins

Hello,
My name is Gabrielle Jane Sink and I was born on June 24, 2009.  I was born with a very rare neurological condition called Hydranencephaly (click link to learn more)  http://en.wikipedia.org/wiki/Hydranencephaly.  At first, no one was clear of my diagnosis.  Doctors thought I was having seizures because I had uncontrollable body movements and I was unable to regulate my body temperature.  My arm kept moving and I was having a hard time controlling it.  I had several test done but know one could figure out what was wrong with me.  The doctors at the hospital where I was born decided that a more experience hospital should evaluate me to see if they could figure out what was going on with me.  I was transferred to Cincinnati Children's Hospital where they took excellent care of me.  While I was there they did a cat scan and came to the conclusion that my brain never developed.  I was living with only my brain stem.  My mommy and daddy were taken to a private room where the doctor informed them of my diagnosis.  Doctor stated that most kids with my condition die before the age of one and that made mommy and daddy very sad.  I on the other hand new that I was a fighter and that I was going to show everyone what great strength and courage I had.  This is where my journey begins.