Hudson Valley Parent

HVP November 2019

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Page 16 of 35 n Hudson Valley Parent 17 a standardized way, Quinn was did not qualify for intervention services. The same results were produced when Quinn was reevaluated a year later at two years old. I began her on a physical therapy regime. Diagnosis and support Fast forward to her third year. Ehlers-Danlos Syndrome is listed in Quinn's 200-plus-page medical file as her diagnosis. She is unable to climb stairs independently, stand on one leg, hop on one foot, or run without falling and often expresses being in pain. But she also has a sup- port team that includes her pediatri- cian, physical therapist, occupational therapist, neurologist, cardiologist, geneticist, and an amazing group of teachers and aides in her corner. It is no longer just me. Rebecca Mills is a devoted mom residing in the Hudson Valley. She taught fourth grade prior to pursu- ing her lifelong dream of having a daughter. With a Master's Degree in Literacy, writing is a deep passion of hers and something she truly enjoys. Raising a child with special needs takes up most of her time, however, in the event free time aris - es, you will find Becky lost in the latest Nicholas Sparks novel. my first pregnancy, I had nothing to compare the experience to except for exchanges with my sister who was also pregnant. Troublesome, how- ever, was that during my physician appointments, my blood pressure readings were through the roof and protein was shown to be in my urine each time it was tested. My body also was so swollen that I could only wear socks or slippers on my feet and upon waking each morning my hands were so puffy that my fingers would curl into a ball. I was told repeatedly that these were normal conditions of being pregnant, until eventually, my doctors discovered that I had severe Preeclampsia, a condition that can lead to birth complications and other problems. I was then induced and my daughter, Quinn, was born. Weighing five pounds and mea- suring eighteen inches long, she was the tiniest baby I had ever held, but she seemed healthy and well. I was absolutely in love. My life's purpose was fulfilled. I gave birth at 2:09 a.m. and stayed awake for the remainder of the morning, holding her in awe. She was alert and kept reaching out to touch my hand. Yet blood tests determined that Quinn had a dangerously low blood sugar level. Subsequent monitoring required that her foot got pricked repeatedly, leaving her tiny feet raw. I took note of sign number one for EDS -sensitive skin that bruises easily and is slow to heal. In my heart, I knew that Quinn also had Ehlers-Danlos Syndrome. A mother's intuition Then came sign number two. Quinn had a vibrant cry, but it soon became raspy and quieter. I expressed my concern to the nurs- es and was told it was because my room was dry. Later, I noticed that Quinn became distressed while crying from her sore foot or hunger. This was sign number two -chronic pain. I asked for her to be examined and was told she was fine. We were sent home the next day and I made an emergency appoint- ment with her pediatrician. There I learned that Quinn's airway was con- stricted from the magnesium I was given shortly before her birth and through my breastmilk. It was sign number three of possible EDS -an inability to process some medicines' correctly. I, for example, am allergic to Benadryl. From there, Quinn's life centered on frequent doctor visits. She was constantly monitored yet proved her strength to us all. As she grew, my hunch file grew, as well. I noticed, for instance, that upon sitting independently around the age of six months, Quinn's eye muscles appeared weak. Sign number four - faulty connective tissues, in this case, the tissues around her eyes. Every time she gazed upwards to look at me, I noticed distress in her eyes as they moved. She wrinkled her forehead to bring her eyes where she wanted to look. At a year-old Quinn was hospital- ized for hypothermia. No cause was determined, nor a diagnosis found to explain why it happened. Intellec- tually, Quinn hit milestones early, like speaking in full sentences prior to her first birthday. Still, my friends and family often commented on how floppy she was while holding her. I knew this, but to have others that were mildly familiar with EDS point it out was alarming. At the same time, it also was reassuring since others noticed what I had, too. I had Quinn evaluated through Early Intervention, but when her above-average intelligence was com- bined with her other test results in Rebecca Mills and her daughter, Quinn, who both have the genetic connective tissue dis- order, Ehlers-Danlos Syndrome (EDS), share a light moment and happy smiles. Check out 'Underestimated Strength,' a blog where Hudson Valley Parent, Kristina Mulligan, talks about life, lessons and Flynn, her son with special needs, underestimated-strength.

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