After 36 weeks of pregnancy, 8 of which were spent on bedrest, in and out of the hospital for preterm labor, and on Terbutaline, a Peanut was born! She was jittery, had obvious reflux, and was a poor eater. From there things piled up. Failure to thrive due to severe GERD, hypertonia, trembling, and on and on. She smiled on time, held her up great, and that was it. No rolling or batting at toys or trying to sit. By the time she was four months old it was obvious things weren't "normal", and we were sent to the Pediatric Neurologist.
From then on it has been a whirlwind. Peanut now sees Metabolics, Neurology, Opthamology, GI, Orthopedics, Endocrinology, Urology, and any other "ology" you can think of.
She has been diagnosed with an SCAD Deficiency. This is an inborn error of metabolism. However, this does not account for all of her medical issues. She has microcephaly, epilepsy, static encephalopathy, neurogenic bladder, mixed tone of hypertonic and hypotonic, ataxia, non-verbal, astygmatism, and more. She is catheterized through a Mitrofanoff stoma due to hydronephrosis caused by her neurogenic bladder. She wears glasses, has a cool purple wheelchair with front wheels that light up, and walks in a gait trainer.
We are currently dealing with seizures that aren't responding completely to medication. We are in the process of getting her a reverse walker and a Sleep Safe Bed.
My Peanut has fought a good fight. She is a strong, amazing, smiling, happy, attentive girl. I am SO blessed to be her Mom!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
