Jude; The diary of a baby and a stroke: Song lyrics

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.

Friday, September 5, 2008

Song lyrics

Cooks Children's called and Jude's initial appointment will be on 9/19. Before then they have given me the signs to look for in case any pressure in his head begins to rise. The signs are him being sick, lethargic, very very fussy, or a raised soft spot. I personally think the pressure will not rise because this was an existing issue, but I know there is no way to tell. I talked to my grandmother tonight and I was telling her how BEAUTIFUL he is! I told her that no matter what we love him with all our hearts. She said we all will and to us he is a normal little boy. She said she felt confident that if Jude does have any issues we will work with him and bring him as far as he can go. Which is very true. I told the pediatrician today it makes you not even want to know if the baby may have an issue. We are so enjoying every minute with him though. He had about a good hour of awake time today just alert and looking around. It was pretty cute! We put him on his boppy on a blanket and he just listened for our voices and looked around the room. He is currently in his swing which he seems to love!! We are all doing well and I even got a nap today. Em went with her dad and she was sad leaving, but told her he needed his time with her too.

As mentioned before I am a music hound. I thought these lyrics were just perfect!! They truly sum everything up.

Rob Thomas "Little Wonders"
"Let it go, Let it roll right off your shoulder
Don't you know The hardest part is over
Let it in, Let your clarity define you
In the end
We will only just remember how it feels
Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away, But these small hours,
These small hours still remain
Let it slide, Let your troubles fall behind you
Let it shine Until you feel it all around you
And i don't mind If it's me you need to turn to
We'll get by, It's the heart that really matters in the end
Our lives are made In these small hours
These little wonders,These twists & turns of fate
Time falls away,But these small hours,These small hours still remain
All of my regret Will wash away some how
But i can not forget The way i feel right now
In these small hours These little wonders
These twists & turns of fate
These twists & turns of fate
Time falls away but these small hours
These small hours, still remain,
Still remain These little wonders
These twists & turns of fate Time falls away
But these small hours
These little wonders still remain"

Emily and Jude!