grandma Pat
01-18-2008, 04:29 PM
Until my hubby passed away from EOAD, I was a 4 generation caregiver. My main one now is an 11 yr old gdaughter with: menigomyelocele + tethered cord, ileostomy, extrophy of the bladder, metrofanoff to cath her, shunt, renal failure, club feet and gendetr reassignment. Her ID twin got the lg intestine, bladder, ureter, external genetalia and most of lg intestine. She is not handicapped as she can do everything- she just has to do it differently and figure out ways to do it. For example, she did not like the news she would not walk again after the last ortho surgery and stnading at the bars was boring- so she is taking steps- with a belt to suport her for falls and a walker set up the way she wanted it set up.
The twins, their dad and a son with many neuro problems live with me. I just retired at 60 as 11-13 appointments a month for Tricia, care q. 4 hours 24/7 for her, a house to keep up and my own health issues were too much for this old lady. Mom is out of the picture and cannot have contact with her kids or any male under18 or she goes back to jail.
her menigolyelocele is getting so large and as she has no feeling below wiast, can't have bladder pain because it is a bowel augmentation, back pain is mild and due to mild scoliosis and walking is impaired but neuro dr does not want to operate. So my main question for a thread will be where do you find pants that fit and don't leave an open bare area exposed to Minneosta winters.
other than that she is a happy :), medically knowledgable and fairly well adjusted young gal. Grandma Pat
The twins, their dad and a son with many neuro problems live with me. I just retired at 60 as 11-13 appointments a month for Tricia, care q. 4 hours 24/7 for her, a house to keep up and my own health issues were too much for this old lady. Mom is out of the picture and cannot have contact with her kids or any male under18 or she goes back to jail.
her menigolyelocele is getting so large and as she has no feeling below wiast, can't have bladder pain because it is a bowel augmentation, back pain is mild and due to mild scoliosis and walking is impaired but neuro dr does not want to operate. So my main question for a thread will be where do you find pants that fit and don't leave an open bare area exposed to Minneosta winters.
other than that she is a happy :), medically knowledgable and fairly well adjusted young gal. Grandma Pat