Jude; The diary of a baby and a stroke: WE WON!

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.

Thursday, June 24, 2010

WE WON!

The hearing officer ruled in our favor. We got our nurse back!!

I don't think this update needs anything more than that news. I am thrilled. I am so happy I want to leave work and celebrate!!!

11 comments:

docia said...: There is a God!!!! This is the best thing for Jude and those of you that have not met this nurse let me tell you, she is special, all of our prayers worked!!! what a great day jenn!!; June 24, 2010 at 9:42 AM
sarah said...: so happy for you. I know it must be a very very large weight off your shoulders.; June 24, 2010 at 11:17 AM
nikvik3 said...: That is awesome news, Jenn! I am so glad God heard and answered our prayers! I know this is such a huge relief for you and Mike. I can't wait to hear how excited Jude is to see his wonderful nurse again! :); June 24, 2010 at 12:21 PM
Cass said...: Yes! So excited for you guys, this is amazing news.; June 24, 2010 at 12:51 PM
mom2nji said...: WHoooohooooo! I just screamed out loud on the phone with my mom who thinks I am now crazy. But I am SOO happy for you. Best news I have heard all week!; June 24, 2010 at 1:09 PM
Purple Quilter Queen said...: Hot dog! That's awesome news Jenn!!; June 24, 2010 at 2:35 PM
Midwest Mommy said...: Oh that is AWESOME!; June 24, 2010 at 5:10 PM
Lauryn &Jack said...: That is such GREAT news! I am so happy for you guys!; June 24, 2010 at 6:51 PM
Sherry C said...: I'm so happy for you and Jude!!! Fabulous news! I knew you would win too. I could not image them coming to any other decision.; June 24, 2010 at 7:18 PM
Candace said...: Oooo Ooooo...Doin' the happy dance here in SC for you guys! I know you are sooooo excited! Rockin' awesome, girl!; June 24, 2010 at 9:44 PM
Anonymous said...: CONGRATS!; June 28, 2010 at 10:43 AM