Our life was blessed with the birth of Lorenzo (Renzo) on September 7, 2007. His father, our son, was a teen parent, whom our entire family has helped him with raising Renzo. Renzo’s birth was a typical joyous occasion, until a few days later when we were told of some of the complications he was born and would live with - Cardiac Peripheral Pulmonic Stenosis (repaired 2007), Colpocephaly (brain malformation), and Dysmorphic Features (low set ears, small eyes, dimple on the bridge of his nose). At the time, all of these were just a bunch of medical terms that had no meaning to any of us. But before he ever left the hospital we were told not to expect this beautiful little boy to live very long. But through it all we never gave up on our faith or our hope to see this little guy grow.
As time went on, we learned exactly what these diagnosis meant, and were later given a few more: Hypothyroidism, Unbalanced Chromosomal Rearrangement (+6p253p22.2; -6q27; +9q34.4); Deafblind/Dual Sensory Impairment (Cortical Visual Impairment, Nystagmus, Ptosis and a Mild to Moderate Bilateral Hearing Loss); Renal Arterial Stenosis with Hypertension; Hypospadius (repaired 2008); Cerabellar Hypoplasia; Hypoplastic Corpus Callosum; History of Febrile Seizures, Developmentally Delayed and considered Failure to Thrive. So far Renzo has had 7 (seven) surgeries and over a dozen hospitalizations in his very short life and he has several medications that he is required to take daily.
But, diagnosis only allowed us to pursue specific therapies, interventions and evaluations that could best benefit Renzo. The most important thing to remember about Renzo is that he is so much more than all of the diagnoses he has been labeled with. And, although his diagnosis is not thought to be life-threatening, his prognosis is unknown.
Renzo's a very busy little guy (and by little, we truly mean little – he is the size of an average 9 month old), he receives physical, occupational, and speech therapy as well as Anat Baniel Method Lessons weekly and it’s because of the many caring individuals who work with him, our family's commitment to give him the best care available, and Renzo’s hard work that he has made so much progress! He loves being independent. He doesn’t walk (yet) but crawls and pulls up on furniture, and spends most of his time on the floor where he enjoys exploring his environment, interacting with his toys, objects and other people. Renzo is non- verbal, but understands and/or uses over a dozen ASL signs. It took almost 3 years for him to eat orally. Prior to eating baby food, all his nutrition came through his bottle. And now that he is eating he loves Chocolate Ice Cream! For many people who have been around kids, eating may not seem like a big deal. But for us, it is another inchstone accomplished. And, yes, we mean inchstone, not milestone. When you have a kid with special health care needs, you relish in the small accomplishments. We have learned to make big deals out of what some take for granted. Renzo has come so far from that fragile little newborn baby that wasn't given much of a life before he ever stepped outside of the hospital.
Renzo loves music, especially Jack Johnson’s “Banana Pancakes”, “Bubbly Toes” and “Better Together” (he’s even seen/heard Jack in concert). He also loves and calms to the “Ava Maria”. Other things that Renzo enjoys are: water/bath time, crawling, being read to (especially “The Kissing Hand” and “That’s Not My Monkey”) and helping Nana Bunny turn the pages when she reads to him. Renzo loves playing rough with his Daddy; loves when his Tata Manuel hugs and snuggles him; and complies when his Nana Bunny asks him to give her his “Kissing Hand”; and he especially loves Tia Angel’s tickles!
We are so blessed to have Renzo in our lives. He definitely has the spirit of a fighter! His strength is truly an inspiration to everyone around him! Renzo teaches us the true meaning of patience, determination, and happiness. He has patience with others and we have come to learn patience from him. Renzo truly has won the hearts of everyone he has come in contact with.
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