Birth Date - August 4, 2006
Diagnosis - Spastic Quadriplegic Cerebral Palsy
Theme: ON THE BEACH
(Things you'd see ON the beach. Not UNDER the sea.)
Due Date: 9/1/17
Alex was born by emergency C-section after he failed to move at all during my last ultrasound. He was small ... 4 lbs, 11oz. I wasn't able to feed much as he needed iron-rich formula to battle jaundice. By the third day I wasn't feeding him at all and he was spitting up bile. I was told he either had an intestinal blockage or infection and would be transferred to a level 3 trauma center. Before that could happen he started seeping blood from his umbilical and all the needle sticks on the bottom of his feet. He was hemorrhaging and had Sepsis. At 7 days old and after an MRI, I was told he had a grade 4 brain bleed and a clot floating in a ventricle of his brain. They said he would almost positively have Cerebral Palsy but they didn't know to what degree. He was started on phenobarbital as a preventative of seizures.
At a year and a half Alex had his first grand mal seizure. We began the quest to find the perfect medical cocktail to prevent them. That worked for awhile. Around 5 he maxed out on all of his meds and they weren't doing the job anymore. His neurologist had a Vegus Nerve Stimulator implanted in his neck and chest. About a year of fine tuning the adjustments and it works amazingly! He has gone from a lot of little seizures and about 8 grand mals a month to having had 1 grand mal in the last 2 1/2 years.
Alex hasn't had a lot of milestones developmentally. His brain and body don't like to cooperate with each other. He is totally non ambulatory, depends on someone to feed him, bathe him, do absolutely everything for him. Through all that, he remains the happiest child I have ever known. He's pretty incredible and there aren't enough words to describe how much I love him. My kid ROCKS!!
"Thank you SO very much. Alexander's quilt is absolutely beautiful, and I know he loves it. You all rock!"