Neptunebob
Joshua and Caitlyn are mine and my wife's biological children. These kids have a rare genetic disorder called SOTO SYNDROME II and Caitlyn also has SHORT SYNDROME as well. Josh is 15 and Caitlyn is 14. This syndrome incorporates intellectual challenges, autism, skeletal disorders, neurological disorders, visual disabilities (NOT BLIND). We were told in 2004 that there were only 80,000 cases of this syndrome in the world diagnoses since the 1960's so it is considered extremely rare. No one knows what causes the syndrome (s).
Joshua has had 10 surgeries on his ears since he was 2 years old to keep from going deaf, strabismus surgery (eye),orchioplexy surgery ( put his boy berries in the sack) Bi-lateral distal tibia osteotomies ( both legs broken and surgically turned forward as legs were twisted) hardware removal from legs. Joshua was also 9 weeks premature and underwent a very boched birth and was not supposed to live but we have him here now.
Caitlyn has had three big surgeries. She underwent the Distal Bi-lateral tibia osteotomies as well as hardware removal and just last June she went thru what the doctors declared life threatening spine surgery. Caitlyn's spine was wrapping around her right lung and was compressing the lung and pushing the lung into the heart. When the surgeons came out of the OR they said that Caitlyn had one of the worst spines they ever operated on as they never took a spine off of a lung. She was hospitalized 10 days and came home. Caitlyn also suffered a STROKE at 19 months old and the stroke wiped out the part of the brain that controls speech so her ability to communicate is somewhat limited. Caitlyn also has petite mal seizures from time to time and has had 1 super grand mal seizure.
As far as having more children that will not happen. When my wife Susan was pregnant with Caitlyn I went to take care of business if you know what I mean.
As far as laundry goes I think it will slow down in time I think we are at a all time high plateau we are still working on nite time potty training and pull ups and depends are in use it's just a matter of time.
Our lives consist of a lot of doctor office appointments hospital waiting rooms. We also go to Physical therapy, Speech therapy, Occupational Therapy, Developmental Therapy appointments. Somewhere in there we also work full time, go to church and try to have a normal life.
David
