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Hi, We are Bill and Connie. We are proud parents of three beautiful
children: Sara - 21, Nicholas - 14, and Billy - 12. (Wow, this picture is 5 years old, we REALLY need a new one
since Nick is now taller than me and Sara, and Billy is up to my chin almost!)
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, urological anomalies,
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, urological anomalies 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. In 2012 Billy had leg lengthening
with a Taylor Spatial fixator, and gained 6.3cm of new bone on his left leg.
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 mostly maintenance issues and as long as we keep on top of his
care, they 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 3/14/12
Wow, seems I forgot to update since last May... well, I was a bit overwhelmed with the whole "fixator thing" and forgot.
Anyway, most of you probably know that the whole process overall went well, we got 6.3cm of growth, the fixator came off on
6/5/12, Billy wore a cast for about 5 weeks to let the pin holes in the bone fill in, and then started phyiscal therapy to
help get him back to walking. That was a bit more of a process than I had anticipated, his knee got quite stiff while
in the cast, but by late September he "graduated" from PT. He did use his wheelchair in school in the begininning since
his school is huge and distance walking tired him out a lot until he built up some stamina again and now only needs it for
emergencies and really long distance walking, just like prior to surgery :)
After the dust of that settled down, we had issues with arm pain (it seems like his nerves running down the middle of
his arms got inflammed from all the wheelchair/crutch use during the fixator treatment) that caused hand numbness. We
tried some PT for that, but it only aggravated the issue, and had an OT evaluation at the hospital. They confirmed what
we always suspected, that Billy's thumbs, hands and wrists are hyper-mobile (loose at the joints) and that his grip strength
is about half of what is typical for his age. This has led to issues in school, as he is required to write more in the
upper grades, and we are working with the school to find the best possible solutions for a successful education. Thankfully,
the transition to the new middle school team has been successful and they seem as concerned about helping Billy do his best
as I could possibly hope for!
Another thing that popped up as a potential problem in November 2012 was Billy's fingernails and toenails being
very mildly clubbed. This is usually caused by some sort of pulmonary or cardiac issue not allowing enough oxygen
in the blood to the extremeties, so this (along with some issues of not being able to breathe while laying flat) sparked off
a whole laundry list of tests, scans, CTs, xrays, sleep study, etc to make sure there was no underlying problem that we needed
to address. Thankfully, nothing turned up to alarm us, and some Nasonex allergy spray to help ease inflammation in his
nasal passages has helped his breathing.
Now that the testing is all done, we are finally able to relax medically for what seems like the first time since about
August of 2011, and take some much needed "down time" mentally from all that... Fingers crossed that the rest of 2013 is nice
and quiet!
Peace and love to all of you!
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