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Brayden’s Story

Every detail about our 'lil man on his journey...
Be sure to read the latest news in the journal from my momma, sign your email address up so you can recieve an email every time there is an update, view my photo gallery to see how much more adorable I become every day, and drop us a line in the guestbook...

And, here's where my journey began:

After hiding out in my mommy's tummy for 23 weeks undetected, I was finally discovered but unfortunately found to possibly have problems with my brain at the same time. After two ultrasounds in one week, it was confirmed that there was definitely a problem. So, my mommy was immediately sent to specialists in Columbia so that they could keep an eye on my growth and development, and make sure that I made it into this world!Barely making it in at almost midnight on June 30, 2008...I made my long-awaited debut weighing in at 9lbs 1oz and 20 3/4 inches long! My mommy and daddy finally officially agreed on my name being Brayden Alexander...and my crazy, giggling sisters, Isabella and Adysson, finally got to meet their new brother that had been making mommy's belly grow and grow!!My mommy had some problems with the c-section and had to have her bladder repaired, but fortunately I was doing very well. Although my head was large, as the dr's suspected it would be...I was eating, breathing, and regulating my body temperature all on my own without any machines! That was wonderful news...but since they still weren't sure of my exact diagnosis, they scheduled my MRI for first thing the following morning so that they could check out what exactly was going on in my little noggin'!That turned out to not be the best news for my mommy and daddy...I was diagnosed with hydranencephaly, which means that I have more cerebrospinal fluid than brain in my head and am mostly surviving off of my brain stem. The cause is unknown for sure, so that's a mystery. The doctors and nurses all told my mommy and daddy that I wouldn't make it for long, offering options for me to be cared for elsewhere, but mommy and daddy brought me home to love and care for. They sent us home with such little to no hope and gave us hospice care nurses. My mommy immediately started doing her own research and found great hope from other families with their own little miracles.Although my prognosis is very poor according to the textbooks, I know that I have a mommy, daddy, sisters, friends, and family all praying really hard for me....God is the best surgeon and I know I'm in great hands.My mommy will keep everyone up-to-date with my treatments and let you know how well I'm growing in my journal...I hope everyone reading it believes in miracles, because I plan on being the next one and reminding those doctors that they're just practicing medicine, they don't really know it all! 

Hydranencephaly 7/01/2008 
Atypical Absence Seizures 8/2008 
Tonic Seizures 3/2009 
Severe Astigmatism/Corrective Lenses 10/15/2009 
Reactive Airway Disease 7/22/2010 
Gastrointestinal Motility Issues (primarily chronic constipation) 10/22/2010 
Hip Dysplasia 11/24/2010 revoked 12/2010 
Focal Complex Seizures 12/30/2010Severe Mixed Spastic Quadriplegia Cerebral Palsy 1/2011 
Tonic-Clonic Seizures with Secondary Generalized Seizures 4/2/2011 
(possible dx) Lennox-Gastaut Syndrome 4/2/2011 
Gastroparesis 9/14/2011
Bilateral hip Reconstruction 7/23/12
Pneumonia/Septicemia PICU stay 8/2012

Brayden joined the angels on November 15, 2012 after respiratory failure at home ( His little light will continue to shine through the Brayden Alexander Global Foundation for Hydranencephaly, which does business as Global Hydranencephaly Foundation (