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 :)

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 :) 

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!

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!

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!