Starting out - 1/10/12
Billy had his fixator placed on 12/27/11 at the International Center for Limb Lengthening at Sinai Hospital in Baltimore,
MD. The surgery went well, we were in the hospital for 2 days, then we got to come home. The hospital stay was
pretty uneventful, other than uncomfortable chair beds for me, and and a very unhappy stomach from the percocet for Billy.
He did his PT well, I learned how to do pin care and how to do his leg stretches so we could preserve his range of motion
in the knee.
After we got home, we settled into a routine with meds and exercising, and on 1/2/12 we had our first official PT evaluation
at AI duPont Hospital, where Billy receives the rest of his care. We started 5 day a week PT the next day. Billy
has 2 days of "land" therapy and 3 days of pool therapy a week, with the aim of keeping his range of motion as the leg lengthens
and the muscles and tendons (and skin) try to keep up with the growth, and to strengthen the left leg to better deal with
the weight of the fixator. He is doing well with that, and especially loves the pool time. The pool helps balance
the weight of the fixator, and he is free to move around much more easily. Not only that, it's the POOL in January!
Pin care has been fairly easy, our doctor subscribes to the "leave it alone if it's not yucky" theory of pin care, as
they've found that daily showering with an antibacterial soap results in less than or the same amount of pin site infections
as aggressive pin care does, and is easier on the child and the parent, LOL... Despite our best efforts (and maybe my being
a bit TOO aggressive, in my inexperience?), we did develop an infection of some of the bottom pins, and we filled the prescription
we were sent home with (cause they KNOW you are most likely going to get at least one infection!) and started him on keflex.
We are a week into that and the sites look great (as great as open wounds around metal pins in your child's leg CAN look,
Billy's mobility quickly came along, by day 4 home he was getting downstairs to play his video games, and by two weeks
post op he was zipping along in his fixator and walker, able to lift his leg with the fixator and do his exercises well.
He was even thinking at trying crutches out :)
Then, Wednesday came... one day after the two week postop mark...
A little backstory for those of you who may get fixators at some point... When we were in the hospital, they showed us
how to do the pin turns, tells me to do numbers 1 and 2 in the morning, 3 and 4 in the afternoon and 5 and 6 before bed to
help space out the sensation, and gave me some wrenches. The wrenches are to tighten the top screws if they get loose, and
for doing some turns if the struts get hard to turn after being in the water and such... Well, we started pool therapy the
day after our first pin turnings, and sure enough, some of the struts were hard to turn by hand and needed the wrench, so
it was great to have...
Wednesday morning rolls along, and I go to turn strut number 1 (an up and down one, we have three vertical ones to lengthen
the leg and three sideways ones to address Billy's leg rotation). We are ten days into the turning, about 7mm of added length
so far. Looking back I realize that the ones that were hard to turn by hand were the vertical ones... I got my wrench and
start turning number 1 to reach our 1mm goal and Billy starts almost crying in pain. Up until now the pin turns have only
produced a funny tingly feeling, and no pain at all, especially with them divided up during the day. He went from the independence
I described above to being as helpless and in pain as he was the day after surgery! I had to help lift the fixator and bear
a lot of its weight whenever he moved his leg and he hobbled about on the walker, dragging his leg instead of zipping around
like before. It was so hard to see :(
I sent an email to the clinic and one of the PAs got back to me (our doc was away) that we might need to slow down the
pin turning process if he was in so much pain. I asked for further clarification, but didn't hear back that day... In the
meantime, he did get to water therapy and did what he could, and since I didn't hear anything else from the doctor, I went
ahead and did our other turns, not knowing what else to do and not wanting to throw things off and cause problems, especially
since he seemed much better pain wise even if not mobility wise. Thankfully, the later pin turns didn't hurt or change anything.
The next morning, thinking the worst was behind me after a good nights sleep and the previous night's successful turns,
I go to get Billy out of bed. His leg hurt too much to move it to get him sitting upright, even in the middle of his percocet
dose :( I tried again a couple hours later, also in the middle of pain dose and again failed. At one point, just laying there
it started hurting so bad that he yelled for me from the other room when I was brushing my teeth. We ended up giving him a
dose of valium (the first he had needed it since the surgery) just to do anything we could. Luckily, that passed and we got
him downstairs about 1:30. Meanwhile, I had sent a frantic email to the doc's office and after consulting with the doc in
Japan, they decided we needed to have xrays done to see what was going on. Again, he seemed better pain wise as the day went
on, and we ran down to our regular hospital, duPont to have xrays done. Amazingly, we were done at 5pm, and Billy said "hey,
we can still make PT", so downstairs we went and he did the best he could.
I got home that night, after Fedexing the xrays down to ICLL, and took a look at them. Our PT had been saying that maybe
he had a bone bridge start to form from fast consolidation of the bone from the symptoms, and an email from the doc to the
PA suggested either that or an incomplete osteotomy originally, since it wasn't usual to have sudden, intense pain like Billy
had. After looking at the xrays, I was pretty sure that it was the second one... this angle shows it well, but it doesn't
continue all the way through, it looks cut from the other side, so I guess it was just this one corner that didn't come apart.
Luckily, ICLL had a chat that night and I was able to talk to Dr. S there and he confirmed my suspicions, after hearing
Billy's symptoms and seeing the xray. He had asked me if the pins were hard to turn or I heard a pop, and I had replied yes,
several of them needed the wrenches from the pool, but no pop heard. It wasn't until we started pin turning again after a
day of rest that I realized I no longer needed the wrenches for the vertical struts! It was that stuck piece of bone the whole
time that was making them hard, ugh...
Anyway, we are four full days after our second osteotomy "surgery", LOL, and Billy is starting to get a bit stronger
and more independent again. He can get up and down the steps by himself again (holding hs fixator with his hands). Hopefully
he'll bounce back very quickly this week and be back where he was before in no time :) As far as complications go, this is
kind of a best case scenario since it doesn't affect our overall game plan, other than another several days recovery mobility
wise... However, I do wish that I had known that having to use the wrench on the pins so soon after the fixator was placed
for the vertical struts only MIGHT have been a sign that something was wrong, maybe I could have saved him some of this pain.
Or maybe not, it might have meant another surgery to fix it, and that could have been just as much of a pain in the butt as
what happened...??? My jury is out on that one, LOL... It happens, it's over, onward!
So, here's hoping we get back on track, and can still make it back to school next Tuesday after our visit down to the
doctor on the 23rd :) If not, it's no problem waiting till the next Monday, we do have one of his teachers coming over twice
a week trying to keep him from falling too far behind his class :)
With the excitement of last week, I forgot to mention something that I had noticed... it is amazing just how much
Billy's foot and ankle have swollen wearing the fixator. Thankfully, it really doesn't bother him, but it is so
odd to see the smaller foot look fatter and almost the same size as the normal foot, when usually it is 4 whole shoe
sizes smaller than the other...
What a difference a week makes! The swelling has gone down in Billy's foot and ankle (guess it must have been from
the "incident" with the bone being stuck) and he is now getting around very well with crutches and propelling himself around
with his own wheelchair. Now that his foot doesn't have to be elevated, we were able to return the rental wheelchair.
Painwise, Billy is down to just tylenol here and there, especially before exercising. I still have a couple half-percosets
to save before "real" PT at the hospital, but I think after this week they won't even be needed. Like always, just when
we are running toward the end of the pain meds and I think we'll never get off them, the need for them just "magically" evaporates,
LOL... same thing after spinal fusion and foot surgery!
We saw Dr. H today for our first "official" visit post-op. The xray looks good, and all appears to be going well,
other than some tightness behind the knee for Billy. He has gained about a half inch of length so far at the 3/4mm rate
and we're just about a fourth of the way done the lengthening, if we end up just going for 2 inches. Not sure what the
final number will be (I know it will be around there, but if they need another half inch to "even out" the legs, don't know
if they'll go for it or not?), but we're making good progress. Dr H gave us an "exercise" for the knee - Billy
has to lay on a bed or surface like that, with his knee hanging off the edge and allow the fixator's (with someone holding
it) weight to straighten the knee. He said we can massage it and add heat compresses to the back of the knee to help
relax the tendons/muscles and allow the stretch. We are to do this for a half hour, 4x a day, yikes. But he expressed
to Billy that this was "beyond critical" to do, since we're only 25% of the way there and it will just get worse and worse
if we don't keep it stretching. Billy is okay with it (didn't love it in the office, doc had TOO much weight hanging
on his knee), we've found a way to lay on the ottoman with leg hanging off the edge and the bean bag chair supporting some
of the weight of the fixator while still allowing a good stretch of the knee. He's much better able to stretch it without
all the weight on it :) I think it will get easier and easier as the days go by. Now, to fit that into the schedule
with PT once a day, exericses once a day, and school work, LOL... :S
Unfortunately, we have to go back again in a week (instead of 2) to Baltimore to double check how the growth rate is
doing by xray, to see if we need to slow down, speed up or stay the same and get our new "program" of turns. I'm sure
he'll want to see what progress the knee is making too. We told Billy he needs to do this or a special knee brace will
be attached to the fixator and a cast on the thigh... Fingers crossed the home stretching works!
1/31/12 - One step forward, two steps back...
Ugh is the word of the day... We went back to Baltimore to see Dr. H yesterday and got new xrays. They show that
we have gotten 2.1cm of new growth since the fixator was placed, but that the density of the new bone is not good enough right
now. The doc has slowed down the pin turning speed to .5mm per day and told Billy to "stamp" his foot regularly during
the day when sitting to "tell" the brain to speed healing in that area. I guess Billy isn't putting enough weight on
the leg, it's so hard to know how much you can push down when someone tells you half your body weight. To demonstate,
the doctor brought a scale in the room and had Billy push down until he got to 30lbs, so now Billy has a lot better idea of
just how much force he can use when walking. It's actually quite a lot, so hopefully doing that will help speed up bone
Second step back was that the doc is still not pleased with the knee extension progress we've made this past week with
the stretching exercises :( We HAVE made progress, but I guess not enough for the doc. He told Billy we'll have
to look at casting the leg and attaching that to the fixator if he can't do well enough at home with the exercises, ugh...
I have to devise a better way to do the exercises to get the maximum stretch without putting too much pressure on the knee
(he CAN'T hold the weight of that fixator in the air with his limited leg muscles!)... pinching and burning behind the knee
where the tendon is stretching is okay, but hurting the knee joint is not. We've also seen issues with knee pain during
official PT at the hospital since starting the stretching last week, poor Billy was in tears last Friday after therapy
and I felt so horrible! We now have a script for Tylenol with codeine (or we can take 1/2 of the percoset tablets
we have left) for PT sessions. He needs no real pain control moving around normally, but we have to get maximum benefit
from therapy for knee extension and leg strength so we need something to get through the pain of therapy... Here's hoping
All in all, I'm pretty bummed. After the last visit, I was expecting the doc to either stay at the same .75mm rate
or possibly even go up to 1mm a day normal rate when we went there yesterday for our next month's schedule of turns.
The slowing came out of the blue at me... BUT, on the flip side, slowing the growth will give us more time to deal with the
knee issues so I guess there is a small silver lining. Dr. H did say that he's seriously considering putting a plate
on Billy's leg bones and taking the fixator off when it's time for the "consolidation" phase after we've gotten our growth.
Billy would still need to be careful while the bone fully solidifys, but since he's already going to be in the fixator for
quite a while for growth alone, this would "free" his leg faster. I must admit the thought scares me, but I'm sure the
doc wouldn't do it if he didn't think it was safe.
2/3/12 - Progress!
Billy continues to do his knee stretching, and it is going well, but still don't think it will be well enough for the
doctor, ugh. We just can't seem to get him past 15 degrees of flexion in that knee. Hope we can talk the doc into
a dynasplint knee stretcher instead of a cast attached to the fixator if he decides to intervene... Still have a week and
a half to make progress though, so not giving up yet!
On Thursday, we basically spent most of the day to/from/at the hospital, LOL... Left at 9:30am for WC clinic to get fitted
and order Billy's new wheelchair. Got a cool Quickie Zippy Zone in metallic copper color, which will greatly increase
his self mobility when in a chair. Then we zipped off to the shoe store to get new sneakers, and got home at 12:45.
Just had time to eat lunch and do Billy's knee stretch, then we had to leave at 2:15 to head out to an orthotics appointment.
My orthotics wizard Frank was able to cut down the sides of Billy's existing AFO brace so it can slip under the fixator without
hitting any pins and widened the foot part to allow for swelling. Since he can wear this, we were able to take 2cm off
his old shoe with the lift, and take off the foot plate from the fixator. It's much lighter now, and gives Billy better
range of motion :) After a snack in the cafeteria (and half a percoset, per our new regimen of medicating for PT), we
went to pool PT and Billy was able to do MUCH better!
So, we still have "land" PT today, but hopefully it will go much better than last Friday when Billy was in tears afterwards...
2/6/12 - Again with the back and forth!
Well, after spending all that time on Thursday getting the brace and shoe adjusted so that Billy could take off the footplate
on the fixator, we ran into another issue. They fit nicely, and work nicely, however Billy's foot has gotten SO hypersensitive
that after a bit they start to hurt. And at that point, ANYTHING touching the foot - be it sock, brace, splint, floor,
wheelchair foot rest- hurts. I got a call Friday afternoon about 2pm and had to pick Billy up from school, and again
today I got a call at 10:40 about the foot. Today, I cried "uncle" and bolted the foot plate back onto the fixator so
his foot doesn't have to rest on anything. It's not a long term solution, but he really NEEDS to be in school and not
fall behind after missing the month of January. We'll have to see what the doctor thinks of this.
On a WEIRD note, Billy had a little spill on his crutches on Saturday... he had just gotten up from the kitchen table
and overbalanced and went down forwards into the living room. He landed on his hands, his left knee and then his fixator.
He was in quite a bit of pain for about ten minutes, while I put ice bags on his knee and thigh (the crutch got caught under
his leg, good thing it missed the "boys" haha) until he could get up on the recliner chair and rest more. He recovered
well from this, but somehow it "loosened" the knee and we have had a LOT more success and ease with his extension exercises
since then. He got a BIG stretch all at once and it helped fix things, who would have thought of that? I wouldn't
wish it on him, but again, something odd happened that turned out for the best for us, just like the odd bone break from the
osteotomy that will help make a partial bridge of old bone through the new bone growing.
2/10/12 - Life on Hold...
This is pretty much an update on nothing, haha. Someone on one of my support groups was asking me a question about
how painful the fixator was, since her daughter will need one in a couple years. It got me thinking of the overall "logistics"
of the leg lengthening process... This is part of my response to her -
"The fixator itself he really can't feel now, although sometimes one of the wires (the thin wires that go all the way
through the bone from one side of the fixator to the other to anchor things) will be sore as the skin of the growing leg tugs
on it. The worst part of all this isn't the pain, it's the other stuff. The PT is the hardest part, and stretching his knee
out (you will want to watch that knee straightening like a hawk when you do the tibia!). Also, there is the rearranging of
the families lives, LOL...
First he was off from school for a month, had PT 5 days a week (1/2 hour away from home), plus home exercises every day,
and school tutoring 2x a week after 2nd week post op. Then, at 4 weeks post op it was time to go back to school, and at the
same time the doc decided we were getting knee contracture and it was time to add 2 hrs a day of knee stretches to our schedule.
Billy's normal weekday schedule since school-
6:45 - Get up, get dressed, make way downstairs
7-7:30 - Eat, gather school stuff, socks and shoes on
7:30-8 - get on chairs (two padded kitchen chairs next to each other) on stomach with legs hanging off edge to stretch
8-8:15 - brush teeth, comb hair, off to school
3:15- pick up from school, head home
3:30-4 - back on chairs to stretch knee out
4- head off to 5pm PT at hospital
5-6 - PT, if swim PT then he needs to shower right away, then home
7-7:30 - get home from PT, grab a quick dinner
8-8:30 - back on the chair for stretching
8:30 - finally time for homework, followed by shower if we did "land" PT
- after he finishes that stuff, he actually has some "free" time until 9:45
9:45-10:15 - back on the chair for last knee stretch, then off to bed
Rinse and repeat, 5 days a week, LOL
We had that schedule for a couple weeks after he started back to school till now, we just dropped down to 3 day PT schedule.
On one of those days off, Monday, I go to Baltimore every other week, which is 3-4 hours roundtrip in the car, plus time to
eat lunch there, wait for the visit and have the visit. That usually takes about 8 hours. Let's just say that I don't know
how I could possibly work outside the home and do this, so it's a good thing I got laid off last summer. We definitely look
forward to Wednesdays and weekends here at home!
Another thing we never thought of is the fact that for a good month after surgery, everything done in a fixator takes
about twice as long as it did before, LOL... It's seven weeks postop and he still cannot bear full weight on the leg, only
50%, so that means crutches (and wheelchair in school hallways), and it means he cannot do anything around the house, and
his brother has to bear the chores that Billy used to do. It's definitely a huge commitment on the part of the whole family,
although most of it falls on the "lead" parent and the child.
Just some things to mentally prepare for when you get to this stage. I would not have changed my mind about having the
surgery knowing all that, but it might have helped prepare me for the shock of being so overwhelmingly needed to organize
all this stuff and make sure it gets done.
Okay, my whinefest is done, LOL... It WILL be worth it in the end!"
2/15/12 - Progress again :)
We are happily savoring the "down" time provided by 3 day a week PT instead of 5 days! To top it off, all the stretching
we have been doing to improve Billy's knee extension have paid off (not to mention the "boost" from the fall - the ortho assistant
called it "days of intense PT all in a couple seconds") and Dr. H finally had nothing bad to say about his extension.
We went to Baltimore on Monday for our 2 week visit, and met up with another family whose 8.5 year old is having his
3RD lengthening, due to a severe case of his tibia bone being underdeveloped when he was born. Billy and the boy get
along well, and at this visit they were talking in the exam room after xrays were done, so I had Billy laying on the
exam table on his belly with his legs hanging off the end of the table to stretch the knee. The doctor walked in said
it looked better, and didn't even get the protractor out to measure the knee angle!
The leg xray looked a bit better this time from a bone density standpoint, but still no where near allowing Billy to
start full weight bearing on it yet. So, for the time being, he is stuck with crutches and 50% weight bearing.
It's not BAD, but it's harder to be independent and carry things while juggling crutches, so the poor boy is rather helpless
and requires someone to always fetch and carry things.
Another positive, and a big one! On Friday, after our PT session, I took the footplate back off of the fixator
to allow direct weight bearing on Billy's foot again. This time, he's had minimal sensation issues, and yesterday he
was even able to wear his sock, brace and shoelift ALL DAY at school! Woohoo! I was afraid we were going to have
to start some medication to try and calm the foot down, or as a last resort add a shoelift to the LONGER leg while the shorter
one is growing, which seemed totally counterintiuitive to me...
So, we are headed back in the right direction and chugging along, even if at half speed, haha. He's gotten 2.8cm
of growth so far, and we are aiming for 5-6cm. That means, if we stay at the current growth rate, at least another 45-50
days of growing time to reach our goal, and then most likely another four or so months in the fixator while the new bone hardens
enough to be "safe" when we take off the fixator. Cross your fingers for us that things continue to go smoothly!
2/28/12 - A good visit :)
Our latest trip to Baltimore went very well! The bone density is looking better on the xray thanks to the higher
vitamin D intake and more weight bearing on the leg, and so far we have gotten about 3.3cm of growth. We still
have close to 2cm to go, but Dr. H increased the turn rate from .5cm a day to .8cm so that is the fastest yet that we've been
turning. If we can keep that rate, then it will only take 1 month to get our length! We have at least 2 weeks
at this rate before we see the doctor again, so hopefuly it can stay this way.
Once we get the length, then we can figure out the best plan of action for the consolidation phase. If we can finish
with this 3 month time table for growth, then add another 3 months for consolidation, then Billy MAY be out of the fixator
by the end of June or early July! Then it's six weeks in a cast to allow the pin holes in the good bone to heal, and
we could be all finished... keep your fingers crossed for us!
3/15/12 - Entering the homestretch!
Last week, I noticed that the skin around the bottom pins was looking an "angry" hot-looking cherry red, instead of it's
usual purple-red (think new scar tissue color) color and it had a bit more drainage than usual, so I decided to play it safe
and treat it as a pin site infection. It's our second one, and all in all a lot less stressful than the first time since
I had already been through it. The only hard part with this infection is getting up at 3am to give antibiotics
now that Billy is back in school and wake up time for me is 6:45am, ugh... Did I mention I hate 4x a day antibiotics,
LOL? It was much easier the first time, only a week out of surgery, when I was still sleeping on a mattress on the floor
by Billy's bed and we could sleep in as late as we wanted... oh, well ;) We gotta do what we gotta do... within a day
or two the pin sites looked fine again, well, their "new normal"... haha, anyone who has seen pin sites up close will agree
that "fine" is not a term that comes to mind! Especially since the way that Billy's leg heals slowly means that his
bottom pin sites tend to have this yellowish "half skin" stuff above them where the skin is pulled up by the growth of the
leg above it. The bottom of the pin pulls down, and there is a teardrop shaped area around the pin as the skin tries
to readjust to the constant change in leg length. Billy's body is a bit slower at making the new skin (because of lack
of muscle in the area and some blood flow compromise from missing one of the arteries in his lower leg) so it has this yellow
stuff that is not quite goo but not quite skin. Luckily, I saw this when his foot was healing last summer, so I know
not to panic and consider it pus/infection, it's just a step between open wound and new skin for him.
Anyway, on to new news... Today we had our biweekly visit with Dr. H at ICLL, and things look great! Billy
has had 4.5cm of growth, and the bone density is still looking pretty good even with the increased rate of turns! We
still have .5cm to go to get to our goal of 5cm (2"), and we'll aim to get that over the course of the next week and a half
before our next visit to Baltimore on 3/27/12. We did see a bit more tightness behind the knee from the faster
turns, but it's not TOO bad, and something we can work on a bit more aggressively over the next couple weeks and should go
away once pin turning is done.
His discrepancy is actually 6cm, but since his ankle/foot isn't quite flat to the floor and his toes dip down a bit,
leaving some extra room for the leg to swing through when he walks won't be a problem, and he won't even need a lift in his
shoe. (Wednesday we cut his current shoe lift down to 1.5cm, yay, almost gone!) I guess when we do
the next lengthening, they will determine if this is a problem or if we should just leave the foot/ankle the way they are
and compensate with a bit of room again.
On our next visit with Dr. H, we will figure out whether Billy's foot has been de-rotated enough for it to line back
up with his knee (it had twisted outward over the years) and whether our final length is good, and tie any loose ends up during
that next week or two after the visit, and then all turns should be done. At that point, we go into "lockdown" mode
and let the bone heal and consolidate. The fixator will stay on (unless we discuss other options such as putting a plate
to bridge the bone and screwing into old bone above and below it to lessen fixator time - they have mentioned this as an option)
during the consolidation phase, which usually takes about the same time as the growth phase. This means we are looking
at about the beginning of July or so to get the fixator off, and then Billy would be casted for a month to allow the pin holes
in his leg to heal.
We still have a long way to go "time wise", but the lengthening part is the hard part with all the complications, the
rest is just healing, strengthening and keeping the pin sites free of infection. It will be nice to get to that point,
since we will only have to go down to Baltimore once a month for xrays to see how the bone is hardening :)
3/27/12 - Home run!
At our last visit, Dr. H was content to "stop with a triple" and go for 5cm of lengthening, vs. the 6cm discrepancy that
Billy has (had, haha). 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.
Most of this week's turns will be rotational, but there is 3cm of height built in to allow the rotation. Looks like
we will be hitting a home run after all!
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 last week of turns 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! Needing
a plate in his leg to strengthen it while healing is no longer even a thought.
Another positive is that Billy has graduated to weight bearing as tolerated with ONE crutch! He now has one hand
free to carry things, which he has not had since the surgery started. Hmmm, guess he can help empty the dishwasher now,
4/2/12 - DONE!
We saw Dr. H yesterday, and we are all done with pin turns. I believe we have gotten just over 6cm of new bone
and seen a significant reduction in the outward rotation of Billy's foot. Any additional rotation can be addressed with
the next lengthening later on. The new bone is looking great, and Billy has graduated to "full weight bearing" status
and no longer needs crutches!
Most suprising of all, Dr. H said the new bone is healing so well that we can come back on 4/26/12 and he may set a date
to remove the fixator some time in May! Never in my wildest dreams did I think it would heal so well or so fast (yay
for LOTS of calcium, vitamin A and vitamin D supplements!). I was hoping for July to get the fixator off, and now it
looks like he will be out the cast (they cast for a month after fixator removal to allow the pin holes to heal up) and totally
done by then! What a nice birthday present getting the fixator off will be for my boy!
4/27/12 - We're "dynamized" and have a tentative surgery date!
It was really nice not running back and forth to Baltimore this month! However, I can't say that the time has been
uneventful, sheesh. About a week after our last visit to Dr. H, my older son tripped and fell onto Billy's outstretched
leg while he was on the chair doing his knee stretches. Nick fell more onto the foot area of Billy's left leg, under
the fixator. This was good for the fixator, however Billy's ankle is mostly fused and has little motion, so it did not
take this insult kindly. When he couldn't walk on his leg the next day (after icing it and calming him the night before,
the accident happened right before bedtime), I called and got a script for an xray to make sure nothing was injured and took
Billy down to our regular hospital to get an xray (figures, even on my day "off" from going down there, we STILL had to go
back!). Thankfully, no fractures were shown :) That said, it still took days before Billy was able to get off
2 crutches and go to 1, and then many days (yesterday, a total of 16 days!) until he was able to give up the crutch and walk
without it. His ankle/foot is still a bit sore, but it's healing and nothing is really wrong that time won't heal.
Once I was finally no longer worried about the ankle and foot, on Monday and Tuesday of this week Billy had pain in the
new bone area during PT. Tuesday night, the pain recurred even worse later that night and he had to lay down and ice
the leg and rest it. I was a bit worried, so I kept him home on Wednesday to rest it, since we were going to the
doctors the next day.
We had our visit with Dr. H yesterday, and all looks good still. Our new xray confirms that nothing is going on
inside to be worried about. We found out that it isn't unheard of to have pain in the healing area and to just slow
it down when it hurts, and let the pain be our guide. The knee extension looks great (especially when they were thinking
of casting Billy above the knee and hooking it to the fixator to "fix" the knee in a stretched position last time!) now that
we've stopped the lengthening, so no problems there either. The new bone is consolidating nicely, and our next appointment
is June 4th, with surgery scheduled for the next day as long as the xray looks good. Dr. H "dynamized" the fixator,
meaning that he backed down on the struts we've been turning to lengthen Billy's leg, which takes some of the tension out
of the fixator frame, and allows the new bone in the leg to bear some real weight. This should tell the new bone to
heal even faster now, so fingers crossed we can do lots of walking (without any new complications!) and bone building so that
the surgery next month will be a go!
5/11/12 - Everything is continuing well!
Billy is SO much more comfortable walking around now, since the fixator was dynamized and the pressure was taken off
the bone. The leg feels good weight bearing through the new bone and PT and walking are much easier. His knee
extension has gotten back to normal with stretching and now that the leg is no longer lengthening, and his ankle has healed
from the injury (brother fell on it while he was stretching). We are now just in wait and see mode until our appointment/xray
on 6/4/12. Fingers crossed!
6/3/12 - Removal?
6/28/12 - Well, Billy DID get his fixator off on 6/5/12 just as scheduled, and the surgery went about as well
as you could possibly ask for. For the first time in a LONG time, he did not get sick from the anesthesia meds, and
actually ate lunch in the hospital cafeteria before we headed home. And, yay, i did not need the emesis basin on the
We've dealt with the cast for over 3 weeks now, and it is scheduled to come off on 7/5/12. We have an appointment
the next day to be fitted for a new AFO brace for his leg, and we will have to do PT for a bit to get him back up to speed,
but then we should be all done with this for now!
7/13/12 - Life "Post Fixator"
Somehow, I must have figured that fixator was taken off, and then the cast after that was removed, that Billy would just
walk off into the sunset as good as new :) I mean, I knew in THEORY that he would need some PT afterwards to build up
What I did NOT anticipate was that after wearing a long leg cast for 4 weeks, his knee would be so stiff, and he'd be
hobbling around with his leg out sideways, straightlegged and looking so pathetic :( He's been using a crutch to walk
around the house, and one week after cast removal he's just starting to bend his knee and bring it forward while walking.
He can stand upright and weight bear on the leg fine, it's just putting weight on it with the knee bent that is an issue.
We had our PT eval this morning, and she said that he has a big imbalance between his quad and hamstring muscle
strength, and this is likely part of the problem. After a week of just "healing" and trying to loosen up the knee,
I found out today that much to my surprise, he can walk a LOT better with his AFO and shoe on than barefoot. Previously,
he's mainly worn them to help protect his fused ankle and improve his gait to preserve his knee and hip from wear and tear
damage. However, with the weakening of his leg from being in the straight leg cast for a month, the AFO is even more
important now to help him with the "roll through" part of his gait. So for now, barefoot walking is limited until we
gain some strength and a better gait pattern. Another funny thing is we need to retrain his brain to realize that his
2.5 inch longer left leg is going to hit the ground sooner than it used to when it was short, LOL. Silly brain keeps getting
"surprised" by the new leg position.
We have to do some sit to stand exercises to do at home to gain strength again and some others for flexibility,
and will most likely need PT 2x a week for the next 8 weeks to get back up to full pre-surgery function again.
I'm very optimistic that before you know it, Billy will be back to his old self, only better :)
Another update - 3/14/13
The PT helped and we finished up the end of September 2012, and over time Billy's stamina has increased. He started
middle school with a wheelchair at least part time during the day since his school is rather large. Gradually, as he
got stronger, he has been able to get around by foot and now justs keep the chair handy at the school for emergency drills
and such. He can walk barefoot again with no issues. He does get some occasional leg pains (once bad enough to
require the wheelchair for the day), but that seems to have stopped over the past month or two (knocks wood loudly!).
Here's hoping that he's good for now :)
However... he did grow again, and the discrepancy is now back at 1cm. Because of the discrepancy being "new" again,
he had his last spine xray without it and we noticed that it causes a bad position for his spine, so it's back to being important
to wear his shoe lift as much as possible to avoid stressing out the spine just above where it is fused. The
docs had estimated his discrepancy to only grow to 1-2cm at maturity post op, but considering it's 1cm already and he's
not quite 13, well... not so sure I believe the accuracy of that? Either way, we knew he'd need another lengthening
as he gets close to full height, so no real difference if it's 1cm or 3cm (I doubt it would go any higher than that), it's
still a short stay in the fixator and if we did it once, we can do it again :)
Pictures from our hospital stay...
|Here is our fixator, Billy also has a splint that he attaches to support his foot
|The Chairbed of Horror, these should be outlawed!
|In the playroom, the day after surgery
Pictures from after we got home...
|Billy loves pool PT!
|Pin site infection starting, not for the faint of heart...
|Xray showing where the osteotomy didn't go through at one corner and broke away during pin turning
|Wow, look how swollen the smaller foot is!
|The pin sites are calming down now
|Looking "good", less redness, less swelling, yay!
|We got 2.1cm of growth, boy does the split look evil though, LOL
|side view of growth, the density is decieving cause the piece of broken bone is behind the new bone
|stretching out the knee, 1/2 hour, 4x a day :S
|Footplate off, brace and shoe on!
|You can order "buffs" (like from Survivor) from Planet Buff for great fixator cover!
|2/27/12 - 3.3cm of new bone growth
|Wow, we are at 4.5cm now! Almost there, and look how nice the density is!
|The legs are almost even, amazing!
|In the before pic, you can see the left knee is lower AND the foot is higher up than right side
|All 6+ centimeters of new bone :) This pic is from 4/11, the new bone is actually denser now!
|The final xray, with all our new glorious bone!
|Eating lunch in the caf, after fixator removal :)
|The final product of all our efforts!