Jack was born on Thursday, December 28th, 2006, at 5:49pm at 6 lbs., 15 oz. and 19-inches long.
While Jack seemed to have a little more difficulty than other children with breastfeeding and reaching his developmental goals, we didn't really start to have concerns until about three or four months. At four and a half months, we endured a three-week hospital stay, but it wasn't until six months (when his hair grew out) that he was tested and diagnosed with Menkes.
Jack absolutely loved his bed and loved to hang out in it by himself, listening to his own voice. If we walked up to him and he wasn't ready to get up and out of bed, he'd close his eyes and pretend to be asleep until we walked away. Then, he would open his eyes again and go right back to lightly cooing.
Jack loved his bean bag chair and also liked to ride around the neighborhood in his stroller with his puppies (Sophie, Bailey and Pecas) in tow behind him. Unfortunately, the weather in Arizona was often too hot to go outside.
We are very thankful that both of his grandmothers, his respite care provider, his hospice nurse, his pediatrician, his vision interventionist and his neurologist helped us to care for Jack. While Mom (Katherine) was already a stay-at-home-mom since Jack was born, his Dad (Anthony), also took a leave of absence from his job to spend some quality time at home.
We'd love for you to visit our website where you can learn more details about Jack's journey. In addition, our "Menkes Parents" page includes our reflections on parenting a Menkes boy to hopefully add some value to new Menkes parents.
On Sunday, September 7th at 7:45am, Jack very peacefully breathed his last breath, earned his angel wings, and joined the heavenly chorus.
Anthony & Katherine
Posted: November, 2008