PFFDvsg

Jonathan's Story 

• Location:       Florida

• Born:             1994

• Diagnosis:      Unilateral PFFD
• Treatment:      Lengthening

• Told by:         Christine Ross

• Date written:  August 2000
• Last Update:  August 2001

BACKGROUND

Jonathan was born in November 1994. He is our middle son. His brothers are
1 ½ years older and 3 years younger. We were very fortunate to have
Jonathan accurately diagnosed before he was 24 hours old. The general orthopedic
doctor came the day after he was born to tell us that he had proximal femoral
focal deficiency or PFFD. He talked to us for a long time discussing different
things we should keep in mind at that time and as Jonathan grew. It was a
lot of information, but I’m grateful that everything he told us has
held true even now. He couldn’t yet tell if the hip was properly formed
but if it was then Jonathan could have his leg surgically lengthened when
he got older. He said that this would be a long procedure consisting of several
surgeries over the period of Jonathan’s childhood and it would be best
if we could stay in one place for this. He talked a little about how it would
affect the life of our family and my husband’s career. He knew that
it might be difficult to stay in one place since we were in the military,
so it would be very important for us to know as much as possible about
Jonathan’s condition and treatments to help maintain continuity. He
said he felt that it would be important to pick a treatment plan and stick
to it. He said we should realize that this would require numerous x-rays,
but they could shield vital places. He emphasized that it was "just one of
those things" and there was nothing that I could have done differently during
pregnancy to prevent it and that it was unlikely that any other children
would have it or that Jonathan’s children would have it. He said he
would give us some information about agencies that could help with the financial
burdens that could accompany all the surgeries and support agencies and suggested
different hospitals that he knew were good orthopedic hospitals including
the Shriner’s system. He said he would look for information and try
to give us some things to read. Our next step would be to try to determine
the condition of the hip.

The doctor was unable to determine the condition of the hip there due to
lack of expertise and equipment. Once we knew that our next duty station
would be in California we flew to the Naval Medical Center in San Diego to
meet with the head pediatric orthopedic doctor there. The other doctor told
us to make a list of questions to ask and gave us some questions to ask so
we could get as much information as possible from the trip. It was our only
negative experience with a doctor. He didn’t tell us one thing that
I hadn’t read in the few pages of text that our doctor had given us.
Although to be fair, maybe there isn’t a whole lot more to tell. It’s
just that I expected a specialist to be able to tell me more than I could
read myself. Apparently, he didn’t care too much for our questions and
was very rude and obnoxious. He told us all about his Harvard education then
said that he could cut our son’s foot off tomorrow if we wanted. We
stopped asking questions at that point and looked forward to working with
a different doctor in the future. Fortunately, the Resident doctor was very
kind and helpful. We did find out that Jonathan’s hip was well formed
so he was classified as type A at that time. The Resident said that there
was a conference the next week with a visiting doctor coming from the Scottish
Rite Hospital in Dallas and they would like to use Jonathan as one of the
case studies. We agreed thinking it would be nice to hear another opinion.
We were relieved when Dr. Herring told us that he felt Jonathan would be
an excellent candidate for lengthening and that he would learn to walk on
his toe before then.

We moved to San Diego when Jonathan was 7 months old. Thankfully, a new doctor
had arrived at the Naval Medical Center. He and his civilian counterpart
(who had worked at Shriner’s and was very familiar with PFFD) always
advocated lengthening for Jonathan. They thought that he would probably have
his first lengthening when he was 8 or 9 years old. Jonathan learned to crawl
on his foot rather than knee. He was an excellent climber since the shorter
leg gave him an advantage. He was fitted with a shoe lift when he learned
to stand and started walking at 15 months. I think that his discrepancy at
that time was about 5 cm although it never seemed like much difference to
us. No one ever noticed unless they saw his shoe. Sometimes even the pediatrician
didn’t notice at first. I always had to tell the corpsmen to measure
his long leg when he had well baby check-ups.

We moved to Monterey when he was 2 ½ years old. At that time we were
only being seen once a year, so just made the trip down to San Diego again
when he was 3 ½ years old. It was at that visit that our doctor said
that he wanted to discuss Jonathan’s case with some colleagues, but
he thought they might want to try to do his first lengthening before he started
school. It was less disruptive to schooling to get one surgery out of the
way before starting and they found the younger kids seemed to tolerate the
procedure well. We were getting ready to move again and decided that we would
try to go back to San Diego since we trusted the doctor there so much.
(I’ve always been nervous about switching doctors since our first experience
in San Diego.)

That’s when we found out that God had different plans for Jonathan and
us. Circumstances beyond our control made it impossible to go back to San
Diego. The likely place for us would be Tampa, Florida. I looked on the
Shriner’s web site and found Tampa. Their web site said that they
specialized in leg lengthening using the Ilizarov technique. I called our
doctor in San Diego and asked what the Ilizarov technique was (we had always
discussed using another technique) and he explained it to me. He also said
that he was familiar with the Shriner’s in Tampa and that he thought
it would be the best possible place for Jonathan. He said the facility was
beautiful and that the doctors were very good. I reminded him about my "phobia"
of new doctors and said that just being good wasn’t enough, I needed
to be able to talk to them. He said he had met them and that they were very
personable and he promised me that I wouldn’t be disappointed. So we
accepted the position in Tampa and in January of 1999 drove across country
with our three boys.

We had our first visit at the Shriner’s Hospital in Tampa the first
week in February. We were very anxious to get started with the lengthening
procedure. When the doctor came in and looked at Jonathan he asked if we
had considered amputation. I remember wondering why he would even mention
that and deciding it must be protocol to mention another option. We said
that we didn’t want to go with that option, we wanted to do the lengthening.
He felt that Jonathan was still a little young and told us to come back in
3 months and we’d talk about it then. He told the nurse practitioner
to get us some information about the lengthening to read in the meantime.
When we went back three months later, the doctor asked me again if I was
sure that we didn’t want to go with amputation. I told him that I would
do nothing first. He made sure that we knew he would need at least 2 and
maybe 3 more surgeries after the first one. I said I understood that. Then
he said we could start the process.

THE LENGTHENING PROCESS

(When I proof read this it seems really long and I thought maybe I should
edit it more so it’s easier to read. Then I thought it is a really long
process and that’s what you need to realize when trying to decide if
it’s the right option for your family. It’s also hard to remove
some of the things about what I was thinking or feeling at the time because
I think those are also some of the obstacles we face. I also want to emphasize
that I believe that the complications are inherent to the procedure. My husband
and I are both convinced that we could not have received better care anywhere.)

The first step was to schedule a time for us to come into the hospital to
stay for a few days for an evaluation. It would give us a chance to learn
more about the procedure and they could decide if Jonathan was really a good
candidate for the procedure. They told us that when he had the surgery itself
we should plan on at least one month in the hospital. We were going to have
to make arrangements for the month stay because my husband would not be able
to take off work for that long and we had the other two boys to take care
of. There were a lot of logistics involved. We had family members who were
going to be flying in to help us.

Jonathan was admitted for the evaluation on June 1, 1999. During the stay
we met with all the different members/departments involved on the Ilizarov
team and learned from them what their part would be in the procedure. This
included physical therapy, orthotics and prosthetics, nurses and nurse
practitioners, child life, and social work, and pain management. Child life
is the group who takes care of activities for the kids and they do pre-op
teaching with a doll so the kids know what to expect. The social worker makes
sure that you have basic needs met and helps make arrangements for you if
you don’t. For example being able to afford paying for hospital meals
during the stay. We weren’t going to have to worry about school because
of Jonathan’s age, but they do have teachers for times when school is
in session. The pain management team talked to us about the different methods
and medicines that they used. Jonathan loved doing all the crafts and playing
games during activity time. He liked getting a snack in his room before bedtime,
too. They casted his leg for the AFO (ankle foot orthotic) that he would
have to wear with his Ilizarov. Another thing that we found very helpful
was a video about the whole process that was made there for us to watch.
Jonathan loved it and we rewound his favorite parts to watch over again.
One thing that the doctor said on the video that is important to remember
is that the leg likes being short and it is going to fight the lengthening
every step of the way. (By the way, we had found a good article on Medscape
about limb lengthening in children using the Ilizarov method. The article
is still available at
http://www.medscape.com/medscape/OrthoSportsMed/journal/1998/v02.n06/mos...).
I believe that everyone we talked to during the evaluation just wanted to
be sure that we had a realistic idea of what to expect before we started.

We were fortunate to meet a little girl who was a little older than Jonathan
who had an Ilizarov on and was going through the lengthening. It was really
helpful to see the device actually on another person. We had looked at numerous
pictures and read about it, but I think it really helped Jonathan to see
it in real life. It was also very helpful for me to be able to talk to her
mother a little about what to expect.

It took about 3 more weeks before we got a surgery date of July
20^th. It gave us enough time to coordinate who was coming when
and get plane tickets.

Jonathan was admitted on a Monday for surgery on Tuesday. On Monday we met
briefly again with the different members of the Ilizarov team to be sure
we understood everything. The anesthesiologist came and discussed what
they’d be doing during the surgery and how they’d handle pain issues.
He was great at explaining everything to Jonathan. He was going to have a
coddle-block so he wanted Jonathan to know that his legs would feel really
heavy when he woke up from dreamland. Jonathan also got to pick out what
flavor of mask he wanted. The child life people came in again and did pre-op
teaching again. They showed him pictures of what doctors would look like
in the operating room with masks on and what the rooms would look like. They
do a wonderful job too. That evening they took him up to see the surgery
waiting area and wake-up room so he’d know what they look like.

The hard thing for him on the day of surgery was not being able to eat all
morning before the afternoon surgery. The surgery was slightly less than
the 4 hours that they told us and they said everything went well.
Jonathan’s leg was so little that they could only fit two rings. Neither
of them went all the way around because there wouldn’t have been room
for him to sit or bend his leg. The bigger Ilizarov’s use "clickers"
on the threaded rod to do the distractions with, but Jonathan had the smaller
size so they had nuts with a marks on it that we would turn with a wrench.
The Ilizarov is covered for the first few days and there are sponges around
the pin sites to absorb the blood. Jonathan was sick and vomiting all of
that first day of the surgery. We suspected that it was the morphine more
than the anesthetic because they had given him some medicine to keep him
from getting sick from the anesthetic. Then next day he was much better.
The traumatic things for him then were getting the catheter removed and getting
the IV removed. His bandages were removed on Friday, I think. Getting the
dried blood-soaked sponges off his leg was another thing that wasn’t
too fun for him. They used saline solution and pulled them off. His leg looked
a little swollen, but they told us his pin sites looked great. Pin site care
was hardest during the first few days when we could only use saline solution
and "q-tips". The blood would dry and stick so of course it hurt when we
tried to get it off. We found that Nintendo 64 was a great distraction, so
started doing his pin care with Mario. They encouraged us to take an active
part in his care at the hospital so that we would be comfortable with doing
it at home. We learned how to do the pin care then how to do the distractions.
We started the distractions (turning the nuts to start lengthening) on Monday.
Jonathan had three rods on his Ilizarov, so we first unlocked the bottom
nut, then turned the one with the marker to the next mark, then tightened
the bottom nut again, and repeated the process on the next rod. They had
three sides so at 4 turns a day we would actually go slightly more than 1
mm per day. We saw the physical therapist that day and did some of the exercises.
Jonathan was anxious to start walking again even though it was cool to be
pushed around in a wheelchair. It was easy for him at first and he walked
all the way back to his room with his walker. The next day he started to
get frustrated with not being able to go as fast as he wanted to with the
walker. They only had him use it a few times a day, so it was still going
well. We took him home that next weekend and managed okay at home. The next
Tuesday the doctor asked if we’d like to do lengthening at home. We
said okay. I asked about bringing him back in for physical therapy and he
said they don’t do that as outpatient. They would look into finding
a local PT for him or I could do it myself at home. When I talked to the
PT she said she thought I could do it as well as an outside PT, so recommended
just having me follow the routine she gave me at home. He was fitted with
his AFO before we left that day. The AFO was attached to the Ilizarov and
was supposed to help prevent him from losing range of motion. They had told
me to keep it on him for long periods during the day and he could take it
off at night. So Jonathan was discharged into our care. We would return in
2 weeks for a clinic visit and x-rays and could call if we had any troubles
before then. I’m sure that living 35 minutes from the hospital was a
large part of us being able to take him home.

It was wonderful to have people at home to help the first few weeks. I could
just concentrate on taking care of Jonathan and others would take care of
the other kids and keeping up the house. Physical therapy got harder after
we started lengthening. There were two exercises that he said hurt and he
hated doing them. We tried all different locations in the house and different
times of the day to do them. Every time we would get to those he’d have
fits. My grandmother said she couldn’t believe it was the same boy that
she knew. Jonathan had always been my calm, happy child--the easy one. She
couldn’t believe how he was yelling. He told me I was the worst mother
in the whole world almost on a daily basis. He would say the meanest things
his 4 year old self could think of. (This continued throughout the time he
had his Ilizarov but only when I insisted that he do something he didn’t
like.) He also wasn’t very fond of wearing his AFO and was upset when
we had to put it on.

The other daily requirements during lengthening are pin care and distractions.
Jonathan tolerated the actual distractions well. Sometimes he liked to help
turn the nuts by himself (with supervision). Pin care had good and bad times.
It would be harder when there was more drainage and more to clean. In the
beginning he would bleed more after PT or walking. He could not get in a
bathtub while he had the Ilizarov on because of risk of infection, so we
put him on a mat in the shower and he would hold the nozzle for his bath
time. I found some little bear shaped sponges that we would soap up for him
to clean around his pin sites. We found that it worked best if we got them
really sudsy and let it sit for a few minutes before trying to rub around
them. He wanted to do this part by himself so we let him and just supervised
by telling if he needed to work on one more to get it cleaner. Another problem
with the pins was that his skin wanted to kind of grow up the pin, so we
had to push it back down. That’s a thing he hated too. If we did it
right after bath time when the skin was still wet it was easier. I would
give him some q-tips and he’d push it down. This became another good
time to yell at Mommy when I told him he had to work on one more than what
he wanted to. Aside from these minor things the entire first month was fairly
easy.

There are a few other every day things that changed. Jonathan had been
independent, but now needed help getting dressed and using the bathroom.
We made some underpants with snap sides and shorts with snap sides for him.
I also found some great snap side shorts at Wal-Mart. We tended to carry
him more that we had before. Partly because he wanted us to, but mostly because
it just made things easier for us. For example, getting in from the car to
the house. You could help him out of his car seat, set up his walker, help
him down out of the van and let him make his way to the house. Or carry him
from his seat to the house. He could walk, it was just slow and at first
he would get tired. So, if I went shopping I’d let him ride in the double
stroller with his brother. All of the boys were barefoot in the house more
than not, and it was an adjustment for him to have to wear a shoe on one
foot all the time. He kept taking it off. Then we’d have to find it
and put it on him before he could walk anywhere. The Ilizarov could scratch
anything it came in contact with including us. There were little plastic
covers that go over the ends of the pins, which help a lot, but sometimes
they fall off and get lost. We had a little bag of Ilizarov supplies with
the covers and some extra nuts. Sometimes he would get caught in the fabric
of a chair. We changed the toilet seat and put a cushion one on so it was
more comfortable and didn’t get all scratched. I put a rubber mat in
the floor of the shower so it didn’t get scratched and so it was more
comfortable for Jonny. We put rails back on the side of his bed so he
didn’t accidentally fall out and hurt himself. We moved his bed to our
room so it was easier for us to hear him at night when he needed help with
going to the bathroom or anything. (Our house at the time had the bedrooms
on opposite ends.) After a few months, he was more independent again so we
didn’t have to do everything for the entire time he had his Ilizarov.

We saw the doctor in clinic after two weeks at home. He said the x-rays looked
good and Jonathan was making good bone. I think I mentioned to the nurse
that he didn’t like wearing the AFO and she told me to just keep it
on as much as we could but that it was okay to give him breaks during the
day. I thought it was a little strange that the growth they measured didn’t
add up to what I knew we had turned the nuts, but figured the few millimeters
could easily be lost in where to measure on the x-ray and with just getting
started with the lengthening. We had not had any pin site infections yet
so the doctor said that Jonathan could swim (in a chlorinated pool) if he
wanted. During the next two weeks therapy seemed amazingly easier. Jonathan
was tolerating it well and keeping good range. I was really optimistic about
the whole process. The only problem we had was that Jonathan’s older
brother had pushed him and he fell on his Ilizarov and the pin sites bled
again. We called and they told us what to watch for and Jonathan was fine
shortly after. It did make his brother realize that he couldn’t do the
same things with Jonathan that he used to do. He kept saying he didn’t
know it would knock Jonny down. I forgot to mention earlier that Jonathan’s
older brother can’t stand to see blood and has a very low tolerance
to pain. He didn’t even like to look at the Ilizarov when Jonathan first
came home. We told his younger brother that it would hurt Jonny if he touched
his device, so he called it an "owwie". Ilizarov’s have kind of a natural
defense with the pins sticking out—it hurts when they stab you too.
So that helped keep his brother’s from trying to rough house with Jonny
most of the time. I thought it looked like one of the pins was bent a little
and wondered if it was from the fall. I thought I’d just ask when we
had our clinic visit.

When we went in for our clinic visit after another two weeks the discrepancy
between what I knew I turned (we had to get new rods because he had gotten
to the end of his first ones) and what they measured was more significant.
I don’t remember the exact numbers but it was only about half of what
it should have been. I asked the doctor about it and he said that the rods
probably bent a little. I think this was when Jonathan got his first prescription
for Keflex for pin site infections too. I kept thinking how could it be that
much difference between what was measured and what we turned. It was just
a mystery to me that the length seemed to have disappeared. The RN who took
care of the Ilizarov was kind enough to call me at home and try to explain
it to me. I asked where the length went and he said that pins and frame bent.
It didn’t seem like they had bent that much to me, but he said to remember
we are dealing with millimeters. I said I know that but we lost over a
centimeter. I’ll always appreciate his patience with me. He explained
that sometimes the harder part of the bone "catches" for a time but not to
worry because it would break free and start to grow and we could continue
lengthening. So we just continued on as we had been. Therapy started getting
harder again and it was getting really difficult to get Jonathan’s AFO
on so I called the therapist and she said to bring him in. She said he was
starting to lose a little range of motion, which was to be expected, and
she made a slight adjustment to the AFO so that it wasn’t quite as straight.
She said to keep it on more during the day and let them look at it again
when he came in for clinic the next week.

It was getting more and more difficult to do the PT and to get the AFO on.
Jonathan seemed to be in a lot more pain that he’d been in before. We
had stopped the Tylenol with codeine weeks earlier and were just giving him
ibuprofen when he needed it. The ibuprofen didn’t seem to be doing any
good at all. I called in about getting more Tylenol with codeine and they
told me that they don’t give it to the kids anymore at this point and
I should just give him ibuprofen more often. I kept thinking that if I have
to get this AFO on then we need more pain medication because he’s in
way too much pain when he’s wearing it. I talked to the nurse about
it when we had our clinic visit that week and she said to give him the ibuprofen
around the clock and it would work better. I wish that I could have conveyed
the problem better to her. His leg had finally started to grow at a rate
closer to what I was turning the nuts, so I was relieved about that. Jonathan
had new rods put in again that day and had grown enough that they had to
put a connector between two rods to have the length that we needed. I talked
to the physical therapist about the problem with getting the AFO on and she
had the orthotics guy check it. He made a slight adjustment to it and I hoped
it would help with the problem. The PT said to keep it on as much as possible,
but it was still okay to take it off at night. I gave Jonathan the ibuprofen
again at regular intervals as I had the previous couple days, but it didn’t
help at all. The next morning I tried to call the clinic, but could only
leave messages. I was getting really worried. I could see that his leg was
getting more bent and he was in tremendous pain when I tried to put the AFO
on. I was feeling extremely under-qualified and even incompetent to be taking
care of him at home. A nurse practitioner called around 4 PM on Friday afternoon.
I tried to explain the problem and she just kept telling me to give him more
ibuprofen, I kept saying that it doesn’t work. But we were just going
in circles. So I asked what else I could do when he couldn’t tolerate
having the AFO on for more than 15 minutes at a time. She said just try to
keep it on those 15 min then give him a 15-20 min break and put it back on.
She said if he lost too much range they would just admit him for physical
therapy. I had no idea what else to do, so said I’d try. I had to take
my older son to Cub Scouts that night and didn’t see how I could ask
a 15 year old babysitter to deal with fighting to get the AFO on, so let
him leave it off while I was gone. He had fallen asleep while I was gone,
so I left if off for the night like we usually did. The next morning I could
barely even get it on with all my strength and Jonathan was screaming
bloodcurdling screams of pain when I finally did get it on. It was obviously
more than whining about not liking it, he was in real pain. I thought --I
give up, I have to take him back to the hospital. I called the nurse (it
was one that we happened to know) and she said that she was really sorry
but there was no one there who could help on the weekend. That was really
depressing. She said to just try to get it on if I could and leave it on
as long as he could tolerate then take it off for a while. He tolerance seemed
to be about 1 minute if that. So I tried having him lay on his stomach and
put the weights on his leg to stretch it like the PT had told me that Thursday
for long periods during the day. It didn’t go over well, but I figured
at least it was something. The next morning was even worse. His leg was very
visibly bent and there was no way I could get the AFO on. I called again
and the same nurse said to just stop trying and bring him in the next morning.
I asked if there was anything I could do for the pain. She said keep up the
ibuprofen and maybe stagger it with Tylenol (which I had started doing anyway).
She said I could clean out the bathtub well with Clorox and put him in the
warm water, too.

I took him in to the clinic first thing in the morning. They said he had
significant loss in range of motion and would admit him. Once he was admitted
they gave him some Tylenol with codeine and he seemed to feel better finally.
He was happy to go back downstairs and play Nintendo. We had also been having
a problem with the new connected rods on the Ilizarov. It turned at the
connection when I tried to do distractions. His rods had occasionally gotten
loose before, but I had been able to tighten them. When the rods were loose,
I would worry that I’d inadvertently compressed the loose rod with respect
to the others and wonder if that would affect the distractions. So we did
get that taken care of that day. However, we didn’t see a physical
therapist. I kept worrying that his leg was getting more bent. Since we lived
so close, they let us go home at night and just come back the next morning.
We saw the PT on Tuesday morning. He was very kind and said that it wasn’t
my fault and that loss in range of motion was not unusual. I asked what they
would have done if he had been an inpatient and he told me some of the things
that they do. He said that he believed once it got to a certain point that
it progressed very quickly and so that’s why it was hard for me to stop.
I still felt sick about it. We ended up staying for two sessions of PT every
day then going home in time to get my older son off the bus everyday and
coming back in every morning after I put him on the bus for school. I took
my younger son with Jonathan and me to the hospital every day. He was just
learning to talk and started saying "Mama, Home!" every time we drove into
the hospital parking lot. I would say no, hospital, but he kept saying Home
for the next several months. We were at about 4 cm of length and the team
decided that we could continue with the distractions and just do the PT to
maintain the range that we had. The PT who we were working with said that
he thought Jonathan would regain some range after we stopped the distractions.

When we were at about 5 cm it was decided that we’d stop the next week
at about 5.5cm. I believe it was the beginning of October. Jonathan’s
Ilizarov had started to shift and was getting closer to his leg in one spot.
We talked to the nurse practitioner and then the doctor. He said there was
nothing he could do short of taking Jonathan back in the operating room and
readjusting the frame. The doctor said he didn’t think that the frame
would move anymore especially after we stopped distractions. I felt bad for
Jonathan because you could see where the pin sliced his flesh. He got another
pin site infection and they gave him more antibiotics. That helped with some
of his pain, which was good. We put a spongy pad on the end of the frame
so it wouldn’t cut his skin. The frame also shifted a little at the
top and would stab into his stomach when he leaned over too far, so we covered
it up with a spongy pad too. He became extremely sensitive about anyone touching
his leg near his pin sites.

Once we stopped distractions we started doing PT at the hospital only once
a day three times a week and I worked with him at home again. It was about
the same as in the beginning. Only a couple exercises that he didn’t
like and he really gave me problems about getting them done. Thankfully,
the therapists would come up with new exercises to do the same things to
try to make it more fun. I have tremendous respect for the pediatric physical
therapists. Our concentration shifted to trying to get the bone to consolidate
which meant walking as much as possible and keeping weight on the leg. When
we went in for our clinic visit the first week in November the x-ray was
really neat to look at. You could see all of the length that we had gained
and could see the bone consolidating. I was really hopeful that we were nearing
the end of this process. Jonathan was walking as well as he could, but it
was difficult to walk on a bent leg. We kept doing therapy to try to get
it straighter so he could put more direct weight on it his femur when he
was walking. He was in a lot of pain from the muscles and it seemed to bother
him the most at night. We had started letting him use a heating pad after
he had lost the range of motion. He woke up almost every night at least once
complaining of pain. Usually we just told him to turn on the heating pad,
but if he couldn’t go back to sleep we’d give him some Tylenol.

Jonathan turned 5 in November, and we had his party on the weekend. I noticed
that the frame has shifted more but knew I could just ask the therapist about
it when I went in Monday morning. It was very painful for him and he didn’t
want anyone to touch it. She said she didn’t think she could do therapy
with him because it was touching his leg and would rub the tendon. She paged
the nurse practitioner who was taking care of Jonathan most of the time.
We went upstairs to see the doctor and he said he’d have to take him
into the OR to adjust the frame. We made arrangements to do it as an outpatient
the next day. The surgery was short and went well. They readjusted the frame
and cut off the top where it was stabbing his stomach. The doctor had the
orthotic guys put an extra support on the AFO so that there would be no way
for the frame to move again. I was very thankful for that. Jonny was much
better again pain wise after the frame had been readjusted. He started therapy
again a couple days later. He had nightmares for the rest of the week after
the surgery crying "don’t touch my pins" in his sleep. But he was okay
again the next week.

I had noticed that Jonathan had lost weight during the procedure and looked
a little skinny, but also thought that his brother had gotten thinner when
he was around 5 so didn’t worry too much about it. My grandmother and
brother came down for Thanksgiving and couldn’t believe how thin he
was. She kept saying he looked so awful—sallow skin, thin face, skinny.
He had always been stocky and had a round face before. I asked the nurse
practitioner about it and she said I could give him Pediasure and or vitamins
if I was worried about nutrition. She said he probably had loss some muscle
mass from not being as active and that would make him look more "boney".
We had been giving him Flintstone vitamins so continued with that. I tried
Pediasure but he didn’t like it and could tell when I put it in things.

When we went in for clinic visit the first of December, we were hopeful for
more consolidation and possibly even enough to have the Ilizarov removed.
You could hardly even tell a difference in the x-ray from the month before.
It looked like we hadn’t made any progress at all. The doctor said we
just had to be patient—like a gardener, and wait for more bone to grow.
We changed his PT routine so that he was doing some exercises on his knee
to get good weight bearing on the bone. Some of the new exercises were fun
and they were different so it was easier to do them with him again. We stopped
giving him pain meds all together (even before PT) because it really didn’t
make a difference if he had it or not. He still woke up a lot at night, but
he seemed okay with the heating pad and occasional Tylenol. Just before Christmas
he wanted to try to walk without his crutches. He could sort of do it, but
with the bent leg it was really hard to balance. I talked to the PT about
it and an O&P guy and they decided they could make his shoe lift in a
wedge shape so he’d have more stability. It did make it a little easier
for him to walk. He had already lost some range of motion at the hip, too.
So when he walked it was kind of like keeping your leg up like a marching
step all the time.

When we went in for the January clinic visit, the x-ray showed he had made
some progress, but not enough to take off the Ilizarov. The doctor showed
me one spot that needed to fill in more. I asked him about whether he thought
Jonathan would need surgery to release the muscle. He said he didn’t
want to do that because he was so young and didn’t want to cause any
unnecessary scarring. He said he thought that it would release more on it’s
own once the Ilizarov was off. That sounded great to me. We continued our
outpatient PT, but now only twice a week. Our goal was just to get the bone
consolidated, so we concentrated on weight bearing exercises and only did
the other stretches to maintain the range we had. Jonathan was walking more
easily so that helped. He continued to have pain at night and we continued
with the heating pad and occasional Tylenol.

When the February clinic visit came up, Jonathan wanted his Daddy to take
him. Daddy said that Mommy needed to go because she always had questions
for the doctor. I said, you can go this time because I don’t have any
questions and don’t feel like sitting around for hours just to hear
"see you next month." I was really surprised when he called me from the hospital
and said they were scheduling the surgery for the Ilizarov removal. We started
trying to figure out the logistics of the scheduled surgery. My mother-in-law
was able to come so we made the plane reservations for her. She would stay
a week to help me in case Jonathan had any problems when he got home. The
week before the surgery Jonathan was goofing around and flipped over the
arm of the sofa and landed on his Ilizarov. It was the first time in several
months that the pin sites bled, so I was a little concerned. We took him
in for an x-ray and we saw a different doctor, but he said it looked fine.

Jonathan was admitted on Valentine’s Day. The physician’s assistant
came down to discuss the operation with me and answer several questions that
I had. She said you do know that they might not remove the Ilizarov, don’t
you? I said NO. She said that the doctor would check for motion in the bone
and if there was any, that he would have to leave it on. I thought about
how we had made all these arrangements so we could have it done now. Also,
I had to tell Jonathan who’s greatest wish at the time was to get his
cast that he might not get it. Of course we didn’t want it to come off
if it wasn’t ready, so we just hoped that it would be okay. We did pray
that it could come off though. We asked if we could keep the frame for a
souvenir after the surgery and they said we could if it was not usable for
anyone else. When we had been in the waiting area for about a half-hour,
we were given the frame. We were so relieved since that meant that it was
off. The doctor came out said that it went well. He thought everything would
be fine and the next step would be to get the leg straighter. We knew that
being in the cast for a month with the constant pull would help a lot toward
that goal. Jonathan didn’t even throw up this time after surgery (no
morphine). He had his green cast and was so happy. He would wear the cast
for a month then be seen in clinic and get his brace on which he would wear
for a long time (no one said exactly how long yet). We would then only have
to worry about getting back strength and range of motion.

Jonathan only had itching problems for the first week and didn’t have
any pain. He slept through the night for the first time in months. He could
walk fairly easily with his crutches since his leg was straighter and
didn’t use the crutches at all around the house. He was in a much better
mood and I was glad to have my boy back. He even started eating better again.
His color got better. Life was just tremendously easier. We had to keep on
him about too much activity now. I was worried that he was going to crack
his cast if he played too rough.

The end of February, Jonathan had a bedwetting accident, which was really
unusual, but got his cast wet. I called to ask what to do about it. I thought
I had gotten it dried enough, but was concerned about odor. They said to
bring him in. When I got there the guy who takes care of the casts said he
could just remove it and put a new one on. I asked if that was okay for the
bone, he said he wouldn’t disturb it and thought it would be fine so
I said okay. When he cut the cast off, Jonathan’s leg looked funny to
us. I didn’t want to upset him so didn’t say anything. Jonathan
kept saying Mom my leg looks weird, what’s wrong with it. I thought
it does, but I didn’t want to ask for a doctor or nurse and upset Jonathan.
I told him maybe it was just because he hadn’t seen it in a long time
or maybe the cast made it look that way. I mentioned it to my husband, but
we figured it was just the way it looked from the cast and didn’t worry
about it. I was really confident since Jonathan had been walking so much
that the bone would look great when we went in for our next visit. One night
he woke up screaming that his leg hurt. I asked where and he pointed to his
thigh. I couldn’t imagine why it would hurt. I checked his toes and
did the checks they taught us to do if there were pressure in the cast, but
everything seemed fine. My husband got him a Tylenol and he went back to
sleep. He had been playing hard outside the day before so we thought that
maybe he just pulled a muscle or something. I checked him again in the morning
and asked if how his leg felt, he said it was okay now. I checked with him
all day and he was fine, so I didn’t call the hospital. About two nights
later he woke up crying that his leg hurt and I gave him Tylenol again and
he threw up. He was sick for several days after that with a stomach virus.
I didn’t give anymore thought to the pain in his leg since it was gone.
I blamed the discomfort that time on the illness.

My husband had been interviewing different places for a new job and after
much prayer and consideration we finally decided on Kentucky. We would only
be 6 hours from my family and only about 45 minutes from the Shriner’s
in Lexington. He had to start work the first week in March. We had planned
on having the boys and I stay in Florida until school was out, but since
Jonathan seemed to be doing well, we hoped that we could move up over Easter.

Jonathan’s clinic visit was on the 16^th of March. Jonathan
was so excited that he would finally be able to take a real bath again after
all these months. I told him he could do it that night when his cast was
off. When they took the cast off his leg still looked funny. Jonny asked
me how long it would be before it looked normal again. I told him we’d
have to ask the doctor about it. We had the x-ray and waited. The doctor
came in and put up the x-ray and said it looks like we have a little bowing.
I was so shocked that anything was wrong. Another thing was it looked like
more than a "little" bowing. All I could think to say was but we were going
to move next month. He said he would postpone it. He said that he would have
to take Jonathan back into the OR and reduce the fracture (straighten the
leg) and put him in a spica cast for about 6 weeks. If it didn’t heal
then he would have to do a bone graft. He showed me where the bone was growing
and consolidating well on the x-ray, so he thought that he would not need
to do the bone graft. I was so afraid he was going to say that we’d
have to put the Ilizarov back on that what he did say seemed easy to deal
with. He said that he could do the surgery the next day if I could be in
early. I said we could do that. Jonathan was really upset about not being
able to get his brace and cried until he fell asleep. I remember when I signed
the release the complications listed said neurovascular damage. I kept worrying
about it that night. I was afraid that I started this whole procedure with
a boy who could do anything and was worried that I would make decisions that
would cripple him

We got up really early and got everyone sent off to where they’d be
for the day then drove up to the hospital so we could be there by 7:30AM
for scheduled 8:30AM surgery. I was so nervous. I had never been nervous
or anxious before any of the other surgeries, but couldn’t shake the
anxiety this time. I was afraid that it wasn’t going to go well. I asked
the doctor before the surgery if Jonathan kept falling into worst case scenarios
or if this was normal to have all these problems. He said that we needed
to remember that first of all the bone wasn’t normal and second the
leg likes being short and it was going to fight us every step of the way
and we just have to keep fighting back. I think that is the most important
thing to remember when going through this whole procedure and I was really
glad that he reminded me of that fact. When he came out of surgery he said
that when he tried to straighten the bone that it started to break at the
other end and he had to stop. I was relieved that it was only the bone that
broke, but wondered how it was going to get straight and how much length
we lost. He didn’t think that he had lost length and said that the bone
would eventually straighten itself out. He said he would have to wear the
cast for at least 8 weeks though. The cast went across his hip so he
wouldn’t be able to sit up straight. They gave me a special vest that
I would have to use in the car. He would have to lay down and be strapped
in. I was glad that we had a van or else I wouldn’t have had any place
for the other kids to ride. His leg was much straighter though, so I figured
at least we made a little progress. Jonathan was up and walking on the new
cast with ease in a just a couple days. In fact it was the easiest for him
to get around since we had started the entire procedure the previous July.
It was difficult to go anywhere though when I had to practically stand on
my head in the back of the van to strap him in. We were very fortunate to
have wonderfully supportive neighbors and friends. They would watch the kids
once a week so I could go grocery shopping and watch the youngest when I
had clinic visits. I just hoped that the cast would be enough and waited
for the next clinic visit the end of March. Jonathan’s beautiful new
bone looked like an elongated Z. The doctor said that it would eventually
straighten and he’d just have to keep a close eye on it to be sure the
cast was doing its job. I could believe him, but I really wanted to know
HOW it was going to straighten by itself. At the time I still really wanted
all the length. It made me sick to think about all that pain to get the last
1 1/2 centimeters and they might be gone. I was also still afraid that we
might have to put the Ilizarov on again. I was glad that his feet looked
so close together though. I talked to the nurses and read enough to make
myself understand how the bone could remodel itself and decided things
weren’t so bad after all. Jonathan was so happy and getting around so
well. I knew things were better because now instead of being "the worst Mom
in the world" when he was upset, I was "just not the mother he expected."

We had our next clinic visit two weeks later, which was about the middle
of April. The bone looked better but seemed to still have a long way to go.
The doctor thought that it would be safe to say we could move the first of
June, but I just to be safe I changed our move dates until the first of July.
I really felt at ease for the first time in more than a month.

That next week the boys were playing on the back patio and the youngest shoved
Jonathan and knocked him down. He fell right on the back side of the cast
near the top and cried and cried. I looked at the cast, did the checks for
circulation and he seemed fine. I called the next day and mentioned that
he had fallen, but I didn’t think it was a problem. The cast guy said
that could bring him in for an x-ray if I was worried. I said no at first
then called him back later and said I guess I did want it. So we made
arrangements to go up the next day for the x-ray. Jonathan had been walking
kind of funny for a couple days and I wondered if his cast was bending or
something, so had him check that too. The x-ray looked fine and he couldn’t
find anything wrong with the cast, so we went home relieved. On that Saturday
night I was washing Jonny’s hair by having him lean over the bathtub.
I noticed some drainage at top of the cast on his backside. It looked a little
bloody, but also a little thick like a fungal infection. He wouldn’t
let me touch it much so it was hard to get a good look. I called the charge
nurse just to tell them about it and knew that they probably couldn’t
do anything until Monday. She said to watch it and call them back tomorrow.
I did and said there was more drainage, but not a lot. It was kind of soaked
up into the cast material. She said to call the clinic the next day and try
to get in to see them. The guy that I needed to see wasn’t in, so they
asked if I minded waiting until Tuesday. I didn’t want to see anyone
else, so said I’d just wait. I took Jonny up on Tuesday morning expecting
a quick visit for a minor problem. He cut some of the cast away so he could
see the area and looked concerned. He cut some more and told me that they
would have to admit Jonathan. Jonathan had started to cry when he was cutting
because the area was tender to touch and also because he was nervous about
the saw. A nurse had to come in to help hold him still while more of the
cast was cut off. The saw was loud and Jonny was screaming then my 2-year-old
started crying because he was worried about his brother. It was really loud
in that room! The wound care specialist came in and agreed that Jonathan
should be admitted. I kept trying to think of ideas of how to take care of
the other two boys and still stay with Jonathan at the hospital. The doctor
was out of town so the nurse practitioner who works with him came in to do
the admission and decide course of action. Everyone was so great at taking
care of us! I felt like I didn’t really even need to worry because everyone
was doing it for me. Jonathan was ecstatic about being admitted. It meant
more Nintendo time for him. Once they got the wound all cleaned and evaluated
it it didn’t look as bad as they had first thought. I was concerned
about how much cast they had cut away and wanted to be sure that it was still
strong enough to hold the bone where it needed to be. The wound care nurse
was concerned that blood and gotten down farther into the cast and wondered
if it would be best to remove the whole thing. I really didn’t want
them doing that without talking to his regular doctor. We saw one of the
other attending doctors later that day and he thought that if we just cut
a little bit more cast that we would have all of the drainage cleaned up,
so that’s what we did. Just to be safe they said no weight bearing yet.
They let me go home on a pass that night and just come up the next day for
wound care then go home again. We did the same on the third day and they
took an x-ray. They felt that the bone looked okay and said it would be all
right for Jonathan to walk on it again. They gave me all the supplies to
do the wound care at home and said it looked much better already, so discharged
us. We had a scheduled clinic visit with the doctor the next week and said
to just keep that appointment.

We saw the doctor that next week. At this time Jonathan had been in the spica
cast for 8 weeks following the 4 weeks in the long leg cast. He said the
bone looked good and we were making progress, but it was too soon to remove
the cast. He said he didn’t want to change the cast because he didn’t
want to disturb the bone yet. That sounded great to me too. He said we should
just be patient--better to be safe than sorry. He said to come back in three
weeks. The wound care nurse said that his wound was healing nicely and to
just continue the wound care as we had been doing.

Our next appointment was on June 1^st. Exactly one year from when
Jonathan had his first admission to the hospital for his evaluation. I was
nervous about getting the brace. I had gotten dependent on the cast and worried
if the brace would hold the bone as well. I also knew I was going to be busy
with getting ready for the move. I had many questions about how we were going
to do the transfer up to the hospital in Lexington and worried about starting
over with a new doctor again. I felt very attached to all the people who
we’d worked with over the past year in Tampa and knew it was going to
be hard to start all over with people who didn’t know our background
yet. I had been warned that it would be a long day, so made arrangements
for both of the other boys to go to the babysitters and warned her that I’d
be gone all day. (School was out by this time.) I knew that there would have
to be adjustments to the brace because it was casted when he had the Ilizarov
removed and his leg was a different shape now with the fracture. I also suspected
that they would be adding a belt portion to the brace and knew that they
would have to re-do his shoe lift. I didn’t even tell Jonathan that
they would be taking the cast off—I just said that we are going to check
on it. He was happy when they said we could cut it off. He kept rubbing his
leg just because it was a novelty to see it again. We were given information
about skin care since his skin was delicate after being in the cast for so
long. They said it would be a good idea to give him baths alone so his
brother’s didn’t step on him. The doctor said no PT yet because
he didn’t want anyone pushing on the bone yet. I got some of my questions
answered and the phone number to call and try to schedule a visit in Lexington.

It really did take all day. Jonathan fell asleep before they were completely
finished with everything, so they had to measure his legs to get the height
for his shoe lift. I couldn’t believe how big the shoe lift looked when
they brought it in. I thought about how a year ago, I had expected it to
be half that high or less. We were going to come in the next Monday to have
some final adjustments on the brace since he was asleep. I took him upstairs
to let the doctor check the brace. He said it looked good. So we finally
went home for the day. Jonathan was glad to sit up in the car seat again.
When we got home he couldn’t walk except with the walker because his
leg was so weak. I felt so bad. I kept seeing the boy who a year ago could
run jump and do anything and now he could barely walk. I got out his old
shoe and the lift was smaller (although only by about a quarter inch) than
the one he wore home. I just kept thinking what have I done to my son and
what did I have to show him for it? I had thought when I started that I’d
be able to show him how his shoe lift was smaller, but it wasn’t. I
knew there was a logical explanation for it being bigger now. It had been
only half his discrepancy when we started and now it was the entire difference,
but it still bothered me. The fracture made a bump in his leg which gives
the illusion of it being shorter than it is. I had believed with all my heart
when we started that we were doing what God had planned, but I let doubt
get to me that day.

Then I remembered that we can do all things through Christ who strengthens
us. We made the adjustments to his brace on Monday and they did cut a little
off his shoe lift so he had room to move his foot more easily when he walked.
I talked to the nurse practitioner who answered all of my other questions
that I wanted answers to before we moved. I was worried about maintaining
continuity of care for Jonathan. I wanted to be sure I understood everything
when I talked to the new doctors. She said that they would transfer all of
the records, but I wanted to be sure I could answer all the questions that
I might be asked. I finally felt fine again by the next day and concentrated
on trying to get things arranged for the move and getting set up to see the
new doctor in Lexington. I had called them on the 2^nd of June
and they said they would request the records from Tampa right away. That
week Jonathan was admiring his leg after a bath and said, "You know Mom,
I think it was a good thing that I had my Ilizarov." I could see the length
we gained when he straightened his leg beside the other leg.

We had one last visit in Tampa on the 22^nd of June. The doctor
said the bone looked good enough to start therapy. He said that I needed
to know that there would be three more surgeries—one femoral and one
tibial lengthening, and one epiphysiodesis (the one to stop growth in the
other leg). I said I could still hope that his leg would grow and he
wouldn’t need three more. He said it won’t. Then he again said
if I didn’t want to go through all the surgeries, we could do the
amputation. I said I understood but I wanted to continue with the lengthenings.
I really believed by now that amputation is a viable option and for some
people the best option. He said we could come back to Tampa anytime, which
was reassuring. He said we should work toward getting the belt portion of
the brace off by the end of summer and start having him try to use his knee
more. Jonathan was walking well by this time, but was still hesitant to try
to walk with the hinges unlocked at the hip let alone the knee. The therapist
told us to keep his crutches so he could try walking with them when the knees
were unlocked.

We moved to Kentucky the first of July. I called the Shriner’s in Lexington
and they did not have Jonathan’s records and said they couldn’t
do anything with us until they did. Jonathan needed some adjustments to his
brace and I really wanted to start PT with professionals, so I was getting
a little concerned again. I called back the next week and they returned my
call to say that they had received the records just that day and the doctor
had an opening on the 19^th of July so we took the appointment.
When we got there we found out that they had not received any x-rays or most
of the records from Tampa. So I gave the resident a brief description of
the past year then he filled in the doctor. The doctor examined Jonathan
and looked at his range of motion a little, then asked if I had discussed
other options like knee fusion. I said amputation? He said yes. I said yes,
but we want to stick to lengthening. He said I know it sounds like a no-brainer,
you want to keep the foot, but it really isn’t. He has to go through
at least three more surgeries and he already has a tight knee. He could lose
a lot of range with three more surgeries. (I couldn’t remember if they
never mentioned that problem to me in Tampa or if I just didn’t pay
attention or didn’t remember.) I said that I wanted to stick to the
current plan and my main concern at this time was getting physical therapy
so he could regain the range that he had lost. He offered me inpatient or
outpatient PT. I picked outpatient because I needed to take care of the other
kids. We also got the brace adjusted a little and talked to a therapist who
gave us some exercises to do at home. She said she would get with the doctor
and call me about the outpatient schedule.

After discussing the visit with my husband, we thought it would be better
to be inpatient before school started rather than trying outpatient and having
him admitted after he’d been in school for a time. We also discussed
why the doctor had even brought up the amputation and decided we better make
absolutely sure no one was telling us that the lengthening was impossible.
We didn’t want to put Jonathan through all of this three more times
then have them say we had to amputate. It would be better to do it earlier
than later if it was inevitable.

I called the care coordinator to ask the doctor more about it. I also asked
the care coordinator about doing the inpatient option, but going home at
night. She called back the next day and said that the doctor said okay to
the inpatient therapy but he couldn’t answer the question yet and would
talk to me when Jonathan was admitted. In the meantime, I e-mailed the question
to the coordinator at the hospital in Tampa and he said that it was their
teams opinion that we should continue with the current course of treatment.
That was really all the reassurance we needed.

Jonathan was admitted for PT and Rehab on the 8^th of August. I
had hoped so much for most of this to be over before he started school; however,
he was going to miss the first week of kindergarten. They evaluated his range
of motion and we had a meeting with the team of doctors who do lengthenings
there. The doctor that we had seen at the first clinic visit concentrates
more on spinal surgery. The other doctors told us a big complication with
the multiple lengthenings was that there would be a loss in range of motion.
Basically, they said what good is a sentient foot on an unusable leg. I
questioned the degree of the handicap—they said it could vary. I asked
what they do about it—they said that they try to recognize the problem
before it became severe. I said so he may not be able to get all of the length
and just have to still wear a shoe lift. They said yes. I said a little shoe
lift is better than a huge one. He could do anything with one before, so
I don’t think it will stop him from doing anything in the future. I
just needed to be sure that they weren’t going to tell me that they
would have to amputate after we’d gone through 3 surgeries and probably
7 years of treatment. They said that was unlikely. I asked them also about
criteria for next surgery. They said first of all we all needed to recover
from this one. I said that sounds like a good idea. They also estimate the
next surgery to be in 4-6 years. I also asked about whether or not the growth
rate would stay proportionate like it had before the surgery. The doctor
said that it usually does if nothing is done but that some people believe
that the forces put on the growth plates during lengthening slow down the
rate of growth. After speaking with them, I still feel confident about sticking
to our current treatment plan. I think it will minimize the possible
complications.

They took a scanogram x-ray to see what Jonathan’s leg length discrepancy
is now. It’s obviously not exactly accurate because of the flexion in
leg, but it shows a rough idea. It says that the difference is 6.2 cm. I
decided that day to stop thinking about it all in centimeters. Every way
they measured came up with a different answer. The other doctor measured
the difference using "blocks" on the floor and got something like 7.5 cm;
the prosthetics guy said isn’t the discrepancy just the size of his
shoe lift which is 1 ¾ in. I smiled at the doctor and said You know
it’s just a math thing but we started out saying that his difference
was 8 cm and we stretched it 5.5 cm, so that would only leave 2.5 cm. When
we started that’s what I expected the results to be, but they aren’t.
It’s not going to add up. The other doctor said, yes, but he’s
grown since then. I suspect that the 8 cm was inaccurate and that his difference
was more than that at the time we started. I really think there’s just
not "apples" to compare to "apples". They looked at his scanogram from July
of ’98 and the difference then was 8.8 cm the doctor said. That scanogram
was taken when he was standing and his hips are uneven, so I don’t know
if that was taken in to account when they measured or how they would compensate
for it if they did. They also estimated his discrepancy (if nothing had been
done) at skeletal maturity to be 18 cm. I said that’s about what I expected
based on where his leg used to come to on his other leg. (Jonathan’s
leg used to come to a point a little above the ankle bone. Now it touches
the ankle bone. His difference now is the distance between the ankle bone
and the bottom of his other foot. We made progress and that’s what is
important.)

He did make good progress the week and half that he was inpatient. He regained
almost 50 degrees of motion. He got his belt removed from his brace and some
more adjustments to the brace. I’m still a little nervous that they
may have cut too much off of the brace in trying to keep it from rubbing
on the wound scar, but the therapist, orthotics guy and doctor all said it
looks fine. He is learning to walk with his knee joint unlocked, so uses
one crutch like a cane. He started school last week. He needs a little help
getting on and off of the school bus because it’s such a big step, but
his teacher says he does great at school. The thing that makes therapy a
little easier at home now is that I’ve been exposed to different ways
to get the same motion after watching his therapists for so long. When he
doesn’t want to do an exercise, I give him choice of means to do it
which seems to help a little. It’s still hard scheduling it in our days
(he’s in all day kindergarten) and sometimes he’s tired and crabby
(or I am), but it’s definitely easier than it was last year.

So, we are really still going through the process over a year after we started.
I don’t expect to see the full results for almost another year. Jonathan
still had decent range of motion for only the first two months of the procedure,
so basically his leg had been immobilized for 10 months. It’s not
unreasonable to expect it to take time to fully recover. Some of the results
I do see now are his old personality is back just as it was and he has better
muscle tone and looks so much healthier. He seems to look back on his Ilizarov
and cast with fondness. When we were moving he found one of his little bear
sponges and asked if he could clean his pin sites in the shower. I said you
don’t have pin sites anymore. He showed me his scars and said they’re
here, but now that there’s no pins I can clean the middle of them too.
He even has fond thoughts of physical therapy. He started laughing the other
day when we were doing his exercises because he remembered a joke one of
his therapists did with him. Sometimes he wants to play some of the games
like he did in therapy. On the 4^th of July we talked about what
we had done the year before—I said just think Jonny, that was before
you had your Ilizarov and now you don’t have it again. He said Wow,
that Ilizarov made time go by faster, didn’t it? I told him a few weeks
ago that someday he would have to have an Ilizarov again. He seemed a little
unsure about it, but said okay. Last week we were doing something and I said
something about what we'd be doing in a few years (forgot the details), but
Jonathan said, But Mom don’t forget I’m going to have my Ilizarov
again. I said Oh yes, you are right. I know that God will continue to be
with us and especially with Jonathan.

Feel free to e-mail us anytime if you have questions or comments.

Christine and Cliff Ross

CRoss1999@aol.com

Jonathan Update (Aug.'01)

I wanted to write an update since it's been a year since I wrote Jonathan's
Story.

Jonathan continued with once a week outpatient physical therapy and PT at
home in September and October. He had a doctor visit mid-September and we
were told that we could start weaning Jonathan out of the brace. We started
with just an hour a day at night and worked up to the hours after school.
He continued to wear the brace at night in the locked straight position to
maintain the stretch on the muscles so we would be sure that we didn't loose
any range in that direction. By the third week in October the physical therapist
said she thought he was ready to go without the brace all day. He used his
crutch for one day at school, and then he was fine. He was released from
outpatient PT the end of October with a range of -5 deg to 35 deg.

The only exercises that he needed to do at home were some knee bends and
one where Jonathan laid on his belly and grabbed his foot to pull the leg
bent. I also encouraged him to sit on his knees and try to get his bottom
to touch both feet whenever he was watching TV or playing on the floor.

We had a check-up with the physical therapist in January and his range had
increased to 40 deg when she pushed him a little. He was easily doing all
the things that little boys love to do. By March he could easily sit on both
feet when he was on his knees, so that's when I considered him to have regained
his complete range of motion.

He continued to wear the brace locked straight at night until our doctor
visit in April. At that time the doctor gave him to okay to participate in
any sports that he wanted to do.

Jonathan learned to ride his bike without training wheels around that time.
He started T-ball in May and had a fun season. We also did swimming lessons
this summer. One day he showed me how he could climb up his door frame in
his bedroom all the way to the top of the door. (Not an activity that I approved
of, but it was really neat to see him be able to do it.)

So, two years after we started this procedure, Jonathan can do anything.
His leg is two inches longer than it was; that and a few scars are the only
evidence that we ever went through any of it.

As we said in the first story, please feel free to contact us at any time
with comments or questions.

Cliff and Christine Ross

cross1999@aol.com