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Thursday, 14 March 2013

 
What's New? Update as of 5/11/12
Today is 12 years to the date since Billy has been born. It's SO hard to believe that my "baby" is 12 now! Things are going very well now, we got Billy's new wheelchair yesterday and it is much easier for him to use than the old one we've had since he was 7. This one is geared toward HIS convenience rather than the parent's. On the leg front, Billy continues to heal and let that new bone consolidate. It feels so much better walking and doing physical therapy now that the fixator is no longer under all that pressure and he is bearing weight through the leg again. We eagerly await June 4th to see if he can get the fixator removed the next day (we are on the surgery schedule already, as problems are not anticipated). Fingers crossed that the xray looks good so the "fix" can be removed, and then it's just a cast for a month and then freedom for that leg!

Posted by conni60640-ivil at 10:15 AM EDT
Friday, 11 May 2012

What's New? Update as of 3/27/12
Time flies, and it drags, LOL. I cannot believe it's been 3 months to the date when Billy's fixator was put on! Yet, it's almost hard to imagine life without it, sigh. However, that said, we are pretty much finished the hard part of our task, yesterday's doc appointment showed that we have gained 5.8cm of new bone and significant progress in turning Billy's foot to line up with his knee better. We have one last week of turns to try and gain some extra correction of the outward foot rotation and then we are done with turning and can start the "healing" phase and let that new bone consolidate.
Initially, there was concern about how well Billy's leg would be able to do this, since he has osteopenia in that leg (low bone density, but not as bad as osteoporosis) and with his lack of muscle and a missing artery in the lower left leg to support optimal blood flow and promote healing. However, according to the doc yesterday, the new bone is growing "like gangbusters" and he's worried it will be too dense to get as much turning in this next week as he'd like, hahaha... this is a GOOD thing, he will need another lengtheing in the future (hopefully with an INTERNAL fixator) and any correction we don't get now can be addressed later on. Healing better and faster than expected is an acceptable complication!

Posted by conni60640-ivil at 10:23 AM EDT
Tuesday, 27 March 2012

What's New? Update as of 1/15/11
Billy had his fixator placed on 12/27/11 and everything went well. Our post op period has had it's ups and downs (see the Life with a Fixator page for all the info), but right now we are headed in the right direction. So far, we've gotten about 1cm of growth in the leg, so we are going at a good rate. Originally the surgeon wanted to go at half speed with the pin turnings, but later decided to go at a 75% rate and things seem to be going well with that. We do have about 5-6cm total length we are aiming for, so still quite a ways to go...

Posted by conni60640-ivil at 9:28 AM EDT
Sunday, 15 January 2012

What's New? Update as of 12/11/11
The last couple updates were over a year in between, and boy was that a nice quiet stretch of time. However, it looks like we are in a more "active" phase of life again, LOL... Since the last post in March we discovered that Billy's foot could no longer wait for surgery. In June he started having pains and pins and needles in his foot when he wore his brace and shoe. The bones in his forefoot were being compressed due to the ongoing deformity and pinching nerves inside his foot. Since it's not good for his spine health to go barefoot with a large leg length discrepancy, it was decided that this was the time to take care of the foot, but we got many more years in between surgeries than we had originally anticipated. In the end of July we had the surgery, and the foot looks great. We did have a lot more of a complicated recovery than anticipated, as Billy's healing was slowed down by the lack of muscle and bloodflow in his foot. Finally, after about 9 weeks, his incisions fully scabbed over and he was able to wear his brace and shoes again and start walking. He started the school year in a wheelchair, until he was able to start walking, and then gradually build up his leg strength again.
That is eventful enough for one school year, however, that is not to be the end of the story. It looks like the school year is going to end in a wheelchair as well, ugh. We went last week to our semi annual appointment at the International Center for Limb Lengthening in Baltimore and found out that that "sometime in the future" leg lengthening surgery was ready to be scheduled. After careful consideration of all factors, we are leaning toward having the surgery done hopefully in February, to allow us to have the most intense parts done during our last year in the elementary school system. I trust them to work with us to get Billy's course work done without affecting his grades and I want this over with before we go into the "unknown" world of middle school next year. He may well start middle school still in the fixator (the doctor feels we need to go very slow and carefully due to Billy's abnormal leg anatomy, and he may be in a fixator for as long as ten months), but it would be in a locked, protective phase to help the new bone we've grown to get stronger and harder rather than in an active growing phase.
Now, as I slowly wrap my head around all the information I'm trying to process since Thursday's appointment, I need to start planning and readying for this upcoming surgery. Hopefully, if we can schedule it in early February, that will allow six full months of healing after his foot surgery and will give him the ability to still enjoy some of next summer, even if still in a fixator. And most importantly, it will allow him to start middle school next year in the best position possible to have a smooth transition!
Brief update - 12/14/11 - We were able to move the surgery up to 12/27/11, partly to "get it over with" and start the healing process and partly because we've met all our insurance deductibles and out of pocket costs for the year, and the money we save will be better spent on physical therapy ;)

Posted by conni60640-ivil at 12:42 PM EST
Sunday, 11 December 2011

 
What's New?  Update as of 3/2/11
It's funny, the last update I was amazed that it had been a year since my previous update, and now this one is over a year in the making.  It's a good thing, it means that things are finally slowing down in our medical odyssey with Billy. 
The past year and some have been nice and quiet on the medical front, Billy is now eating like a horse, or at least like you'd expect a ten year old entering a large time of growth to come.  He's not gaining much weight at all, considering how much more he is eating now than before, but he's maintaining his weight, and he's been very healthy, so I won't complain, much.  It still awes me, after the years of struggling just to get enough calories into him to maintain his weight, and most of those calories were from liquid supplements and not actual real solid foods... he hasn't needed to drink any supplements now for about 3 years.  He is still very small for his age, though.  It's probably a good thing he isn't gaining too much, as too much weight with his leg and spine issues would be just as much a problem as not enough, so this is most likely better in the long run. 
Our medical appointments have dwindled to twice a year for NS, orthopedic surgeon and GI and annually for nephrology and urology and things have been pretty much unchanged over that time.  His kidney remains healthy, his spinal fusion is nice and solid, and neurologically we have no further decline since his last spinal cord detethering.  His bone age is about 2.5 years behind what it should be, but that just means he has more years of growth left to help catch up.  The leg length discrepancy has grown a bit and his left foot has warped even further due to the fused bones midfoot, but we are still able to compensate with an AFO orthosis so we can delay surgery a bit more.  Our hope is to delay it until he gets to about 13 and do the foot surgery and the leg lengthening at the same time.  Fingers crossed it works out that way!
Other than that, Billy is now in 5th grade, Nick has moved up in to the middle school, and Sara has graduated from high school and is now in the last half of her Freshman year at college!  All the kids are doing well academically, and Sara made the School of Education Dean's list her first semester :)  I really miss her, I am grossly outnumbered with all the testosterone here, and need her estrogen backup, LOL...

Posted by conni60640-ivil at 1:49 PM EST
Wednesday, 2 March 2011

 
What's New?  Update as of 9/15/09
Wow, I can't believe it's been a YEAR since I've done more than add a couple pictures to this site.  I got a part time job working 20-25 hours a week last October and there never seems to be enough time for all I have to do now.  But things are easier financially now, and with a child who will be starting college next year that is important.
Medically speaking, it's been a very uneventful year.  Other than one really nasty virus that laid Billy low for a week with a high fever, lethargy and no appetite, he's been healthy as a horse.  After that, it seems like he's been eating anything that doesn't move.  For a child who has always struggled to get enough calories into his body to maintain his weight and grow just a bit, this is a new and very welcome change.  Good thing I'm working, now I have to buy more food to keep him fed, along with his tapeworm preteen brother ;)   All in all, his kidney is doing well, neurosurgically he's been stable since his last detether three years ago, his spinal fusion looks wonderful with no complications, and GI sytems all doing very well.  The only thing that doesn't look great is his left foot, that continues to twist and tighten, but we are still hanging in there with creative foot bracing and shoelifts.  As long as we can hold off that surgery, we will, in the hopes that waiting will allow one more surgery to get him throw his growth period, rather than needing more than one.  Less surgery is less potential future foot pain.  Our hope is to straighten the foot at the same time we do the leg lengthening surgery.
Other than that, we are all doing well.  Sara goes for her drivers license test on Friday, and we are in the thick of getting ready for college applications and last minute college visits before we send out the applications.  I can't believe my "first baby" is now a senior in high school, where have the years flown?  Nicky is in sixth grade now, and in the transition middle school, which is still a part of the elementary system, but set up more like middle school so the kids won't have as hard a time next year in the "real" middle school.  Billy is in fourth grade, and our teacher meeting went well.  Hopefully all the kids will have a great year in school :)

Posted by conni60640-ivil at 6:48 PM EST
Tuesday, 15 September 2009

 
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 :) 

Posted by conni60640-ivil at 8:31 AM EDT
Monday, 29 September 2008

 
What's New?  Update as of 6/20/08...
Well, school is finally done and the kids are ecstatic.  Billy had a great year, as did Nick and Sara.  I can't believe Sara is done her second year of high school already!
Luckily, things are still quiet on the medical front.  Billy just started a new heart medicine, an ACE inhibitor called Enalapril, which the nephrologist thinks will help protect his single kidney from wear and tear damage over the years and preserve good function for longer.  He said that they have been finding that people born with only one kidney have small damage done here and there and that they can wear out in middle age, and anything we can try to prevent or extent that sounds like a good idea to me.  We do have to have blood tests done a month after we start to make sure the medicine agrees with him, but if that is clear there are few side effects to worry about.   We have our routine ortho, urology, nephrology and gastroenterology appointments coming up over the summer, but I don't expect any issues to come up from them :)
Now it's just enjoying the down time during the lazy summer days, finding Sara a part time job, enjoying our Caudal Regression picnic this weekend, our anime conventions, and our vacation in North Carolina's Outer Banks later this summer!

Posted by conni60640-ivil at 8:15 AM EDT
Friday, 20 June 2008

 
What's New?  Update as of 4/1/08...
I can't believe it's been three months since my last update!  Things are quiet, just how I like them.  Billy recently had a new MRI done, all looks good and the leg pains he had been having in January subsided after a couple weeks.  The neurosurgeon is happy with things, so no new worries to add on.  Billy is eating well with his current medicine routine, and gaining weight and growing nicely, which is a big change from earlier years.  Other than strep once, the winter was uneventful illness wise.  We got our wheelchair and a handicapped parking placard for those times when we will need it (although hopefully they will be far and few in between!) like for all day outings, field trips at school and long mall trips.
Billy will be making his First Communion on April 12th and Sara and I will be walking for the March of Dimes on the 27th, other than that looking forward to warmer weather.  Billy and Nicky have been going outside playing with their friends whenever the sun is out after school, they are more than ready to get rid of the coats!

Posted by conni60640-ivil at 9:44 AM EDT
Tuesday, 1 April 2008

 
What's New?  Update as of 1/14/08...
Thankfully, after the eventful summer and fall, things have been nice and quiet for the most part lately.  We had a visit with urology in October and decided that another videourodynamics study was needed to make sure all was well, and that was done in November.  The results looked great, so one less worry for now. 
We also ordered a nice portable pediatric wheelchair for Billy for when we go out on distance or speed outings.  It is really nice in that it has detachable wheels on it so it can convert from a regular transport wheelchair for when we just want to go somewhere quick to a regular self propelled wheelchair if he wants to do it himself sometimes.  It will be good for Billy's self esteem to have the choice in whether he wants to push himself or have someone do it for him.  He got to pick out the color, so he was pretty excited about that.  We hope to receive it sometime soon.
Other than that, we had a very nice Christmas holiday (new pictures are up in the album, wait till you see how big the cat got!) and enjoyed the time off from school. 
Last week Billy had another ortho checkup, and his spinal fusion looks like it is fully fused, with no problem areas.  That was good news for sure.  We see the neurosurgeon next week for a six month checkup, Billy has been having leg pains a couple times over the past few weeks, really limping badly when he got home from school.  The ortho doc found no reason on his xrays for the pains, so I assume they are from the tethered cord acting up.  Here's hoping it's just from a growth spurt aggravating the nerves and it will settle down soon!

Posted by conni60640-ivil at 12:38 PM EDT

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