Wow, what a fast, busy summer!  We had a wonderful time, between the Make a Wish trip to Florida in May, then we went down the shore for two half-week mini vacations in July and August, plus the rounds of barbeques, holidays, and general summer fun :)  Sara and I went to two anime conventions, one for the day nearby, and another was an overnight trip with fourteen of us in the group.  I've posted some pictures of them in the summer album, it was a lot of fun, and some of the costumes we saw were amazing!

Now it's fall, and back to the school year and schedules.  Billy had a gait analysis done (some pics of that in the summer album too) the end of August, and we see the ortho doctor on 10/16 to get the results.  We hope to see if there are any problems that are preventing Billy to walk his most efficiently, to help with his long distance endurance.  He has a hard time keeping up over distance, in heat, or on uneven surfaces.  Most of this is probably caused by weakened or absent muscles on his left side, but if anything else can be corrected to help him out it would be great.  If not, a wheelchair for distances may be in the future.  I know it was necessary at the theme parks in Florida this summer, and it helped him keep his energy for fun, rather than using it all up in a half hours walking... 

We also have our routine uro appointment coming up this month, but other than that, it looks like it's mostly quiet.  Time to enjoy the fall weather, and get back into the school and homework routines. 

We just returned from Orlando, FL from Billy's wish trip.  We got to stay at the Give Kids the World Village, and visited Universal Studios, Magic Kingdom, Epcott and Sea World while we were there.  We rode on amusement rides, saw cool movie rides, fished, mini golfed, ate yummy foods, and did many other fun things while we were there.  Billy said it was the best week of his life, and his birthday last Friday was the best one ever!  So many thanks to the people of Make A Wish and Give Kids the World foundations for making this dream come true!

Now, back to business.   In April, our visit to the urologist showed that the kidney looked good, although Billy tested positive for a UTI three times between February and April.  His uroflow test was same as usual, not great, but it gets the job done.  He did show residual urine after voiding, which we have not seen since 2003.  We need to go back this week and do another post void residual test to see if the last test was a fluke or a new ongoing problem.  I'm hoping it's a fluke, but if not it would explain the high levels of bacteria in his urine without an actual infection being present.

Our Walkamerica drive raised $715 for the March of Dimes, and Sara and I survived the 6.5 mile stroll, although somewhat sore the next few days for the effort!

Happy St.Patty's day to all the Irish and all those who want to be on this day :)  Things are nice and calm here, our February doc visits went well.  Ortho has lifted some of Billy's restrictions while at home, so he can ride his "motorcycle", go on the swingset and slide, and do some light running again.  There's still not enough supervision at school to make sure another child doesn't hurt Billy doing these activities, so he has to wait another month and a half to play there.  He's happy to take what he can get now :)  The kidney doc said that Billy's BP looks okay for now, we're just gonna wait and keep an eye on it.  They did find a urinary tract infection that was nonsymptomatic, but other than that his lab test results looked good.

For now, we're just happily anticipating the spring.  We'll have a big Easter dinner here for our family, then in April Sara and I will be walking for the March of Dimes Walkamerica to raise money for premature babies and birth defect prevention.  Sara was five weeks early, and Billy, well, you all know that story (see above if you don't, haha).  Anyone who wishes to help us raise money for this wonderful cause can click on the Walkamerica link to the left near the top and it will direct you to my Team Page where you can make online donations.

Peace and love to all of you!

Things have been pretty calm the past two months.  We saw ortho and NS for post op visits in December, and all looks good there.  We follow up with ortho next week and hopefully many of Billy's physical restrictions will be lifted.  It's almost six months since the surgery, and Billy is still pretty much only allowed to walk.  Hopefully he'll be allowed to run and ride his four wheel electric "motorcycle", and go on the playground equipment.  He's been a real trooper about the restrictions though, I'm amazed.  It has been helpful that much of this has been during the winter, when the temptations to run around and play outside aren't as great!

The school nurse has been monitoring his blood pressure, and while some numbers have been in the high range, it's been just barely, and many of the recordings are only in the watch range.  We see nephrology next month to see what they think.  They had talked about putting him on some type of BP med in the future to help protect his single kidney, not sure if they will want to do that now or continue watching and waiting. 

Other than that, it's been pretty quiet and uneventful since the holidays ended, with the exception of Billy's getting slammed with colds, strep throat and a GI virus and losing some of that weight we had added.  We are trying him on lactose free milk to see if this will help the excess gas and stomach bloating we always see on his xrays, since after several days of not eating or drinking his "milkshakes" we noticed that the gas had cleared out.  We're trying to see if he may be lactose intolerant (I have become so over the years, but his little stomach and GI system have been through a lot more than mine in a shorter time!), and so far he does seem a lot softer in the belly and less bloated.  Fingers crossed the xray next week confirms this!

Thankfully, our visit to the nephrologist helped calm things down.  She ran some blood tests and urine sample, and can't find any kidney changes that could be causing the BP problems.  She is advising that we keep an eye on it weekly at the school nurses office (and it hasn't been quite as high as it had been, although still in an area to watch) and that we should consider putting Billy on one blood pressure medicine in the future.  The one she has in mind is not because she thinks his BP is high enough to medicate now, but that this drug has been shown to help protect kidney function in people with only one kidney to help prevent problems later down the road.   We see her again after the new year.

So, things have calmed down, and we are enjoying our holiday season.  Billy was approved for a wish from the Make A Wish foundation, so it's like an extra present this year :)  They will send the family down to the Orlando Disney World area for a week in May, after Billy is healed enough from his spinal fusion surgery to go on the tamer rides again! 

Hope everyone has a joyous holiday season!

Okay, because dealing with post fusion recovery isn't fun enough, now we have a new concern...  When Billy went to his urology appt on 10/24, the nurse said his BP was high, so she took it again on other arm... which was higher, so she used the first reading...  I had later remarked to neighbor (who works at our pediatrician's office) what it was (116/73) and she said they rarely see a child his age over 100, usually in the 90s.  I did some net researching (who me? haha) and found that three instances at different times of BP at or over the 95% for a child's age and height is considered hypertension.  Looking back in Billy's records, I have found three (not counting ones after his surgery during our inpatient stay) instances going back to February 06, but no probs before that, that I know of... That first one in Feb was 121/82!  Much higher than my usual of 110/75... :S

Well, Billy has been back in school now since 10/11 and is enjoying himself.  Everything is going well, although we are dealing with some spinal shock to the nerves handled during the spinal cord detethering.  Thankfully they aren't causing too many problems and we hope that the nerves will settle down as time goes by.  Billy is feeling good and really enjoying the extra freedom of motion that the brace allows over the bulky cast.  Other than the bending at the waist and twisting that the brace was designed to prevent, he can move freely.  Plus, it's very closefitting to the body, so he can now dress and undress himself again :)

Now, he's just chafing at the restrictions he has to deal with while we wait for the bone to fuse solid enough to allow normal activities.  He can't run, jump, twist or bend which pretty much rules out many activities, including gym class in school.  The teacher has been very understanding and has appointed him her helper, with his own whistle and stopwatch for him to use, and helping take attendence and make rules up for games.  We see ortho again on November 9th, and at that time we'll see how things are going, and if any restrictions can be lifted or not.  Probably not, due to extent of the fusion area, but I'm just hoping things look good.  I tell Billy this is a blink of the eye compared to all the time he will have once it is "all fixed"...  Thankfully, with colder weather coming up, he'll spend more time indoors doing less active pasttimes, so he won't feel the restrictions as much.

10/3/06 miniupdate - we got the brace, and it is wonderful!  I added a new page for Billy's fusion surgery and put all the pictures (except xrays, left them on spine page) from the surgery on the new page :)

We had our six week ortho checkup today, the xrays look great!  You can see the new bone starting to form in the fusion area, and his back is nice and straight.  They took out the staples from the incision, all thirty of them, yikes!  Billy did NOT love that!  It cost me a toy plush snake, a box of Tic Tacs, french fries and a California Roll sushi for dinner, hahaha....

The doctor is being ultraconservative, said bone looks like it's forming nicely, and we want to do everything we can not to disturb it.  Billy will get his cast removed on Tuesday, and they will fit him for a custom made brace (a TLSO brace for those familiar with them - see pic down below) from his underarms to his butt while we wait.  The doctor wants him laying down on a stretcher while they make it to keep him safe from harm, LOL... Good thing we have a portable DVD player I bought for the surgery, guess we can catch a movie while waiting.  They said it would take about two hours for the brace to be moulded, then close to an hour to have it fitted (straps added, adjustments made, etc.)

It will be SO nice to get him in the bathtub to soak that scurvy little body!  Sponge baths only do so much to get you clean!  Other than baths, though, he'll have to wear the brace 24/7 till at least six weeks when we have our next ortho appointment.  I'm guessing he'll want him to wear it till around 4-6 months postop.