Jude; The diary of a baby and a stroke: Peep peep, moo moo

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.

Tuesday, May 18, 2010

Peep peep, moo moo

Well if you have been following my blog from the start of our rocky journey, then this video should bring a few tears. I captured some of Jude's recent accomplishments on film. This shows Jude with his favorite barnyard crib toy. I posted a video of him about a year ago playing with it, but not like this. You can see Jude looking directly at me, which I consider an accomplishment with his cortical visual impairment. You can also see him searching for the animal I have instructed him to find, and well I won't ruin the surprise. Without further delay, here is Mr Jude and the barnyard.

It's subtle changes, but they are ones that make me smile with pride!

5 comments:

Candace said...: YEAH Jude! What a big boy! That is awesome Jenn! So happy for you! Hugs to sweet Jude!; May 18, 2010 at 1:21 PM
mom2nji said...: The little things mean so much more! Great job Jude! Whoo hoo.; May 18, 2010 at 3:16 PM
Gilda said...: How wonderful Jenn, I know how proud you are of Jude and the new things he learns to do everyday. I am very proud of you too handsome boy!; May 18, 2010 at 4:31 PM
jocalyn said...: he is totally playing with that! i love the sweet smiles too!!; May 18, 2010 at 7:58 PM
emily said...: So thankful someone encouraged me to video often, what encouragement to catch these milestones (or inchstones as we sometimes say) on film!

Way to go Jude!; May 20, 2010 at 7:57 AM