Jude; The diary of a baby and a stroke: A special video and a great picture!

Where it all began

If you are just joining my blog you may want to begin reading back in April of 2008 when our saga began www.cjengo.blogspot.com/2008_04_01_archive.html . Basically we were given a grave outlook for our baby when a level 2 sonogram was performed, They discovered a bilateral stroke, or "brain bleed". You could actually see two small dark spots of blood on his in utero MRI. From there we went through being told to terminate, fearing for his life, denial, acceptance, sorrow, hope, defiance, and pure joy. We were told his issues could range from nothing at all to "profound retardation", so we had to give him a chance at life. Jude was born a happy and what we thought was a healthy baby scoring a 9.9 on his apgar. At three months he was rolling, smiling, and seemed to be doing very well. Suddenly one night Jude had what I thought was a seizure and soon my worst fears were confirmed.
Jude's early in utero stroke had caused massive damage. Our brain cells come from our choroid plexus and that's were his bleed was. This caused a neuronal migrational disorder, that in turn caused bilateral closed lipped schizencephaly (can be caused by vascular insult). That means Jude has "clefts" on both sides of his brain, but it's worse on one side. Jude also has vision loss, cerebral Palsy, and epilepsy. His seizures (Infantile spasms) grew loud, and violent as we chased a medication to control them. We were lucky to find that Depakene was our saving grace! After many sleepless nights, a baby in pain, and a prescription for even more Depakene his seizures were some what controlled. We are so thankful, because some parents never find any controlling factor for seizures. So please join us for our journey. Learn why Jude's laughs and smiles mean so much to us. Follow our little inspiration as he teaches those around him to be grateful for their life, their children, and to find all babies a blessing. Join our fight in spreading stroke awareness and help us help others. Find out why my daughter Emily has shown us what the definition of compassion really is and how she spreads smiles through hospitals. You can visit her website at http://www.emilyssmileboxes.com/. We have spent countless hours in the hospital with Jude and it's now our mission to spread as many smiles as we can through hospitals via her charity. Thank you for being here and for reading about our blessings. Our motto: One day at a time we put one foot in front of the other.

Saturday, April 28, 2012

A special video and a great picture!

2 comments:

Judi Music said...: Hi Jude!!! I'm so excited.... you must be thrilled to pieces to get that on video! I'm so proud!!; April 29, 2012 at 10:22 AM
Nisha said...: Hi Jude you don't know it yet but you're going to change the world someday how can you not with such a great mom, dad and sister :); April 29, 2012 at 1:46 PM