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.

Wow, I can't believe it's almost three weeks since the surgery.  Billy is doing GREAT!  Almost all of the nerve pain he had in his right leg is pretty much gone, and he's now walking around on his own steam.  He is able to sit in a chair for fifteen/twenty minutes at a time (his leg still gets a bit itchy from the nerve issues after that, but it's slowly resolving), and get crawl up or down the stairs by himself, or walk them holding a grown ups hand.  He could probably walk the stairs, but MOMMY isn't ready for that yet, haha... I want to take no chances of him falling after what he's been through!  Now it's just the hurry up and wait while we see if the fusion process takes, which can take four to six months to find out.  His first orthopedic post op visit today went very well, his xray looks great, his incision looks great (other than being very long and having more than twenty staples in it, yikes!).  In three weeks he goes back and gets the staples out, and possibly the cast removed.  I'm not sure if he will need a plastic brace or not after that.

The older two went back to school yesterday, I can't believe my first baby, Sara, is a high school freshman!  Nick really likes his teacher, so that is promising. Billy will be getting homebound instruction for an hour every day after school by his teacher he had for kindergarten last year, and he starts that on Monday.  I'm sure it will be good for him :) 

Hope everyone has a great back to school start!

We are home from the surgery after six days in the hospital!  All went well, and it's a good thing that the surgery was postponed to add the spinal cord detethering part, as the neurosurgeon found him tightly tethered, much worse that it looked on the MRI.  Attempting to do the spinal fusion without addressing this could have caused some serious spinal cord issues.  The doctor ended up having to fuse up higher than he had anticipated (sacrum to T11) since vertebra which had looked normal on the xrays turned out to be abnormal when he went in to do the surgery and he had to go up to the normal bone area in order to achieve a good result.  Leaving the abnormal vertabra above the fused site could have caused a false joint which could potentially cause spinal cord compression.  The surgeries went well and the only issues we are having now is some phantom itching on Billy's right leg and some knee and foot pain as his nerves "wake up" from being handled/moved in position.  Hopefully this will resolve over the next couple weeks.  Billy will start home physical therapy in a couple days to try and get him up and walking well (he is walking slowly with a walker now when he needs to get to the bathroom and such) and improve his posture (he's pretty hunched over still now - but can you blame him after what he's been through!).

All in all, he's very happy to be home and to be playing (fighting?) with his big brother Nick again!  I've put a picture of the fusion xray in the spine page, and a couple hospital pics in the summer pics page.

Well, so much for the previous info about no spinal cord surgery being needed, ugh.  We went to our preop visit on Wednesday and I was informed that the neurosurgeon needed to talk to the ortho doc, as he felt that he might want to detether Billy's spinal cord again (they can get stuck with scar tissue after initial surgery) to make sure there are no problems after the fusion.

We visited the neurosurgeon this morning, and he felt that since Billy has shown signs of problems temporarily in the past after growth spurts, and since his spinal cord already looks a bit stretched on the MRI (hmmm, he failed to mention this previously...!), and since his scoliosis is pretty significant over a small area (60 degree curve in the area of his hemivertabra) that any straightening may cause a problem if we didn't detether again now.  I guess it's better to find this out now, and postpone the surgery a couple days (new date is Friday, August 18th) than find out a problem exists after they have fused over the area that the neurosurgeon would need to access!  Of course, this will lengthen the surgery by two hours to 6/8 hours but better than having to do two separate surgeries.

Good luck to all with the upcoming school year :)  I can't wait to throw the two older kids back into the school routine, and Billy will have someone from the school coming to the house to tutor him while he is at home in the body cast (an armpit to the top of the legs cast) for two months or so. 

Well, we did get some good news :)  The repeat MRI for Billy looks unchanged, his tripping and falling have resolved, and his videourodynamics study (which assesses bladder function) looks great, so we do not have to add another spinal cord detethering surgery to our list of things to do this summer!  I am very relieved at this.  Billy always scares me every time he has a growth spurt by showing signs of a retether, but then things settle down.  No wonder I have SO much grey hair!!!  Good for the hairdresser though, haha...

Anyway, we are now having some fun with school out and the lazy days of summer here.  Nick is turning 8 tomorrow, and I can't believe it.  Where has the time gone?  We look forward to enjoying the nice weather,swimming in the pool, playing with their friends, and a weeks vacation at nice shore resort prior to Billy's fusion surgery on August 14th... 

Hope everyone has a happy, healthy summer!