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Hi, We are Bill and Connie. We are proud parents of three beautiful
children: Sara - 16, Nicholas - 10, and Billy - 8.
Our third child, Billy was born on May 11, 2000 with VACTERLS
association and features of Caudal Regression/Sacral Agenesis, a rare combination of congenital birth defects.
His complications include: smaller left pelvis, hemisacrum (missing left half), hemivertebrae and L5 anomalies, mild
long segment scoliosis, extra left rib, low imperforate anus, single right kidney, urogenital anomalies with hypospadius,
smaller underdeveloped left leg with equinovarus club foot, tethered spinal cord, PDA (closed on its own) GI reflux, delayed
gastric emptying/gastroparesis and mild swallowing dysphagia. So far, he has had surgeries to correct the imperforate
anus, tethered cord, urogenital anomalies, hypospadius, and club foot along with ear tubes and a tonsillectomy/adenoidectomy.
He also had a spinal fusion done to stabilize his spine and pelvic junction.
It was overwhelming at first, but we
have adjusted well, thanks in part to a wonderful family. Billy is a happy, healthy little guy with a lot of energy
and spunk. We were blessed in that all his problems are maintenance issues and do not affect his overall health.
Despite many surgeries, and countless other assorted procedures
and doctor visits, he is the sweetest and happiest little camper. Except, of course, when big brother Nicholas is torturing
him, which is pretty often.
Since Billy's birth, we have been through a lot, and have learned to appreciate
the things that are truly important in life - namely family and health. We are continually amazed at his strengh of
spirit, and the way he overcomes any obstacle put in his path. We also feel truly blessed to have such a wonderful family,
which has supported us so much since Billy's birth.
If anyone wishes to share their experiences, or needs advice on
similar problems or just some moral support, feel free to email me at Conni60640@aol.com.
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What's New? Update as of 9/29/08...
We had a great, relaxing summer. We went to the Outer Banks in North Carolina and spent a week at a house near
the beach with four other families. The kids really enjoyed themselves and we had a great time eating out, at the pool
and the beach. Sara and I had a great time at our two anime conventions also :)
Other than that, the rest of the summer was pretty much laid back, with the kids out playing in the neighborhood with
friends, playing with their leggos and magnetix or video games. Sara lived on the computer as usual ;) A nice
summer to unwind after the school year. But now I'm quite happy to have them all back in school!
Medically, it was fairly uneventul other than the orthotics department telling me that this was the last AFO brace they
could make for Billy. His foot has changed to the point where he needs the bottom of the AFO to be almost 45 degree
angle since he cannot bend his foot flat anymore. To allow him a flat platform to stand on, they added a heel lift to
the brace (they had done this before too, but this one is larger). Since so much height has been added into the
inside of the shoe, we were able to reduce his shoelift outside to only 1.5cm. I guess we'll be talking foot surgery
with the Ortho doctor come January. Probably next summer sometime we'll need to get Billy's foot fixed. When he
was a year old after his clubfoot surgery, the doctor predicted that his foot (due to fused bones in outer top of midfoot)
would need surgery in the preschool years, so making it till nine is a big bonus, so I have to look at it that way :)
Right now, the kids are hounding me to decorate the house for Halloween, a favorite around here since my daughter Sara
was born nine days before then and considers it a birthday theme :) Our basement is soon to become a spooky haven for
the kids ;) I'm looking forward to the lovely fall weather, having Sara start her driving lessons in the next couple
weeks (yikes!) and take the PSAT again, and the holidays coming up. Then it will be applications time for trying to
find financial aid for college soon! I can't believe she will be seventeen next month and is in her junior year at high
school, where DID the time go? We start our college campus visits later this month.
Also, our support group for VACTERLS is selling wreaths to raise money to try and offset registration fees for our upcoming
VACTERLS conference . See the box below for a link to the website set up for selling the wreaths, and there you can
see pictures, get detailed information and see some of the families that will be benefitting from sales of the wreath :)
Peace and love to all of you!
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