AJ Patnode and Family

About Us

Family Our son AJ (Albert Jacob) was diagnosed in utero with Arthrogryposis. In our household this means he is unable to: move three limbs, sit up, swallow, breathe on his own, lay on his tummy, be held in our arms, give big hugs, eat solid food, drink a cool glass of water, talk, play, take a bath and many others in a way that most perhaps take for granted.

At 19 weeks gestation we had our typical ultrasound, the baby (we didn't know the sex) was moving and everything looked great!!! Because of my husband's (Mike's) heart condition, under the advise of his cardiologist, it was suggested we do another ultrasound to look at the baby's heart. We did so at 24 weeks gestation. The baby was not moving, but the heart was beating just fine!! We decided that we would carry this baby for as long as God wanted that baby on earth. We were told that the baby might not make it to or through the birth process.

AJ was born Dec. 17, 1998 at 36 weeks gestation. He weighed 3.7lbs. He was born with broken femurs although he was born by cecearian. He did not move. His legs were and are still very stiff, his right arm is flaccid, the other has limited range of motion or able to move as arms are meant to move. His first weeks of life put him on a ventilator, a first surgery for a muscle biopsy and tracheostomy. He had a second surgery at a month old to put in a gastronomy tube. AJ was released from the hospital at 50 days old. We took our 5-pound son home for three weeks. Then back to the hospital where AJ was put on CPAP, a ventilation device. Although AJ breathes on his own, this gives him a fuller breath so he can maintain his oxygen saturation. (In other words, he needs this to keep him from turning blue.) We were at the hospital for two full months.

We came back home again in May of 1999. AJ has been home ever since, aside from check ups and a third surgery 10/2000 for ear tubes and to descend his testes.

During his time at home AJ receives Occupational Therapy, Physical Therapy, a teacher that comes once week, and we have been working with Speech Therapy. We have 16 hours a day of in-home nursing. We have someone with AJ continuously, 24 hours a day.

AJ is a wonderful inspiration to us and we are very honored to be his parents.

~Mike & Lori Patnode

Photo by Lifetouch Studios