In the Trenches
November 1, 2016
anorectal malformation, bowel management, bronchial deformity, Family Stories, imperforate anus, incontinence, November 2016 Feature - Urogenital, tracheo-malacia, tracheoesophagel fistula, Urogenital System, VACTERL
When my husband and I were researching the needs of our would be son, we turned to various physicians, websites, and blog posts in search of not only what the diagnosis was and what it would entail medically, but also what the day to day parenting for a child with his special needs would be …Read More
Knit Together
October 13, 2016
Amy, complex heart defect, Heart System, kyphosis, scoliosis, surgery, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula
“I am fearfully and wonderfully made. Your eyes saw my unformed body when I was knit together in my mother’s womb.” – Psalm 139 I can count on two hands the physical diagnoses our little Chinese warrior princess has in her medical history: tetralogy of Fallot (repaired) tracheoesophageal fistula (repaired) stricture of esophagus tracheomalacia chronic …Read More
Sign Language and Adoption: The Value of their Voice
August 7, 2016
ASL, attachment activities, August 2016 Feature - SIgn Language and Adoption, Family Stories, Heart System, sign language, speech delay, tracheo-malacia, VSD
You might think that sign language is only for children who are deaf or hard of hearing. We’d like to encourage you to reconsider. Signing is an incredibly valuable tool in any adoptive parent’s tool belt. It makes communicating with your newly adopted child exponentially easier – no matter their age or special need. And …Read More
Dear Younger Me: Five Things I Want You to Know
July 11, 2016
adoption realities, Amy, July 2016 Feature - Dear Younger Me, tracheo-malacia, tracheoesophagel fistula
I have been a mother for eighteen years because I count pregnancy as motherhood. Our oldest daughter is 17 1/2, currently college shopping, and heading into her senior year of high school. Our son is a 185 pound football-and-basketball playing, learning to drive, almost 16 year old. Then in May of 2013, after a 12 …Read More
More than I could bear
June 7, 2014
Amy, esophageal stenosis, scoliosis, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL
Sometimes I forget that we have a child who is a “heart baby”, a lifelong cardiac patient, a survivor. I see her scars everyday. Scars from a surgery I wasn’t present for, scars from one I was; and, I have come to love what they represent. They are a daily reminder of healing, a unique …Read More
Surviving Gotcha Day
May 7, 2014
Amy, esophageal stenosis, scoliosis, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL
A year ago today we had spent only one day with our daughter. After arriving in China, we spent 3 days in Beijing, visited the place she called Home for almost a year and met the women she called “mama”. Then we traveled to XinJiang, her province, tried to sleep on Gotcha Day Eve, and …Read More
“but it said repaired”
April 7, 2014
Amy, esophageal stenosis, scoliosis, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL
I vividly remember reading our referral paperwork. I remember first reading the descriptions of her developmental milestones and evaluated her development through mom and teacher goggles… “she follows objects… she is tracking… she is grasping things… she is babbling and forming simple sounds… she turns her head when there is a noise… she can hear …Read More
TEF, TOF, and VACTERL, oh my
March 7, 2014
Amy, esophageal stenosis, scoliosis, Tetralogy of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL
Don’t you love those acronyms? I have come to really appreciate the time they save, the space they save, and that I can safely dodge oodles of mispronunciation. For example, until 2012 those letter sequences meant nothing to me. If someone would have told me years ago how much I would come to know about …Read More