Bowed Tibia: turning struts again

On Sunday we emailed Dr. Scott to give him the heads up that we were having hardware issues for the 3rd time but we had "fixed" it with wire and tape. He asked if she was uncomfortable and if she could bend her knee. We explained she isn't comfortable when it is loose but as long as the nut is tight she is comfortable and can bend her knee. He wanted to see her just in case so we saw him this morning even though we get the piece off on Thursday.

He is just as baffled as we are with the repetitive loose hardware and we all can't wait until Thursday when the piece comes off.

The loose hardware "fix" passed the test. He had seen tape before but never the wire.



See the fancy green wire?


While we were there he noticed her tibia is very pronounced now. It just happened the past couple of weeks so we took an x-ray.

See the bow in the tibia?

We are done lengthening but we did get a new 7 day RX for turning the struts so that the bone itself moves position. Mary was a little nervous about this since some of the struts will be turned backwards but he verified the length of the bone will not change, just the angle. He also offered that these turns should not be painful.

It was also a good opportunity to ask some questions about Thursday's procedure. Mary feels so MUCH better after she received a letter from her pen pal Miranda in Canada that explained how she will feel after Thursday's procedure but she is still a little nervous.

Dr. Scott verified:

• the wire and pin sites will be bandaged when she wakes up
• he did mention the pin sites in her thigh will probably bleed a lot the first day but he likes that because it flushes the area
• the pin sites will look like a hole (because he doesn't stitch them closed) but will scab over
• she can bear weight on the leg right away. If she isn't up for walking on it he at least wants her to stand on it.
• the procedure will be in the normal Operating Room at the hospital where she had the fixator put on

I showed him a bone I have noticed that protrudes on the left side on her lower back and he explained it could be how she holds the left hip and/or because of the unevenness but it will correct itself once she starts straightening out her left leg.

He also confirmed the estimate to be in the fixator is one month for every cm. gained so she should be in a fixator for a little over 6 months total since she most likely gained 6.6 cm.

I asked after doing all of this how do we try to prevent the bone from breaking (which I hear is common). He explained it is more common with femur lengthenings and she will be completely non-weight bearing for two weeks when she gets the whole fixator off.

At the end Mary told him I wanted to have a party on Thursday night to celebrate getting the thigh ring and foot piece off. He said maybe not Thursday night but Friday would be OK. (We aren't really having a party but it was good insight to how she will be feeling on Thursday.)

Close up of the new bone growth that is already consolidating very well!!!

The nurse finally asked Daddy what he does for a living since he seems so knowledgable. That is our Doctor Daddy :-)

Done Lengthening!!!

Today was our last day of lengthening and we have a cake to prove it.

Towards the end of the lengthening process Mary did start feeling uncomfortable so we starting turning smaller turns twice a day to hit our number vs. turning the struts once a day to get our number. Actually with strut number one that has always been tight we turned 4 times a day to make it easier on her.

The difficult phase one is over and we CAN'T wait until Thursday when she gets the thigh ring and foot plates off. I truly think it will be one of the happiest days of my life.

We are experiencing our 3rd hardware problem. A nut is coming loose in the same rectangular cube that we had issues with two times before. We are holding it together with wax, wire, and tape until Thursday when it comes off permanently. Did I tell you we can't wait for Thursday?

Cheese wax to hold loose nut

wire and tape holding loose hardware

Sleep has been pretty rough again so we made the executive decision to not put the additional strut that keeps her leg straight on starting tonight. Our thought process is the lengthening is over so hopefully her body won't be getting any tighter and in reality we all need some sleep. She has a medical procedure on Thursday and we are anticipating some hard PT ahead of her as she gets her ankle and knee moving again so she needs rest.

We finally painted Mary's toes since you can see them all of the time. As you can see she has a lot of work on her toes ahead of her- even though we have focused on trying to uncurl them the whole time.

Curled painted toes

Thigh Ring and Foot Plate Removal is Scheduled for 8/2!!!

Mommy and Daddy were thrilled when we received confirmation yesterday that the thigh ring and foot plate removal is scheduled for 8/2/12 at the hospital Mary requested. 

It is a 45 minute outpatient procedure.

The past two times we were given times for the procedures and were told the exact time can change but they won't even give us a time until the day before this time. The scheduler said it will probably be one of the first procedures but they don't like to commit to a time until the day before. (This is a new scheduler than before.) One of the first procedures would be icing on the cake since the first two procedures were at 1:30 and 12:30.

Mommy and Daddy have high hopes that things (most importantly sleep) will get much easier after this procedure and so we are very excited to be moving into the 132 day (based on the 6.6 cm. gained) consolidation phase.

As you notice I keep saying Mommy and Daddy. Mary is nervous about the procedure. I think it has a lot to do with having some experience under her belt and knowing how anesthesia, etc. makes you feel.

Mary has a lot of questions about how she will feel once the two pieces are removed etc. Unfortunately, I don't have answers for her. The only thing I have heard is that the first time her foot touches the ground it will be super sensitive and may feel ice cold and hot at the same time. The PT told us to gentle rub towels on her leg to prevent it from being super sensitive. We also massage her a ton so I would hope she isn't as sensitive as she could be but we will see.

Her stomachaches are gone, the painful pulses still occur and will since we are still stretching the nerves. Some of her pins started discharging again yesterday which is totally normal. Her hip and thigh still bug her but I would actually say less than before. Her knee hurts when we have the additional strut on to keep her leg straight.

The countdown is on 5 more days of lengthening and 9 more days until the removal!!!

unofficial 6 cm and counting down

Yesterday Mary should have reached 6 cm. 

Bone chart marking 6 cm.

Mary has had a rough week battling headaches, and stomachaches along with her normal lengthening daily battles. I will admit it hasn't been as bad as when she had the additional strut on her leg to keep her leg straight 24/7. That was a long 17 days where she could never get comfortable.


At first I was confident the headaches and stomachaches stemmed from her lack of sleep but then we weren't sure if it was related to the medicine she has been taking or just a regular bug. Her pediatrician leaned towards a bug. I am sure she has lost even more weight.


Tuesday will be the 6 day countdown until we are done at (hopefully) 6.6 cm. Our ultimate goal was 7 cm and .4 may sound like its nothing so why not go for it when you are so close? The answer is just like when I ran a Marathon years ago and my hubby said what's 4 more miles after 22 miles? The fact is it's 4 more miles AFTER 22 miles!!! 


The body can only take so much before you probably do more damage than good. And we should celebrate that we will be getting 6.6. Not too shabby. That will leave her with a cm. difference vs. 7.5 cm. difference.


We are anxiously waiting confirmation for the date she will get her top ring and foot plates off. We are hoping in 9 days. We will have 132 days of consolidating after we stop lengthening but we think the hardest phase will be over then. Of course what do we know :-)

5.6 and growing: Final Plan for Lengthening

We saw Dr. Scott today and used a very scientific way to make sure we were getting an accurate measurement as we approach our final days of lengthening: it involved a high tech paper clip, ruler and a calculator :-)

Dr. Scott taped a paperclip to Mary's leg before her x-ray so he could measure the actual paperclip, vs. the x-ray of the paperclip then he applied the difference to the measurement the x-ray showed of Mary's leg. The end result is we have gotten 5.6 cm. (Goal has been 5-7cm.)

Taped paper clip to Mary's leg for the x-ray

X-ray of 5.6 (see the paper clip!)

Close up of the 5.6 cm!

Measuring the paper clip to determine the distortion of the x-ray

The plan is to take 3 days off to give her body a break and time to catch up. She is getting more and more of the pulses from her nerves feeling the stress of the lengthening.

Then we will lengthen for 10 days straight in hopes to get to 6.6 cm then stop lengthening permanently.

The long awaited procedure to remove the most annoying pieces on her thigh and foot should be around August 2.

Mary has been getting nervous about the long awaited procedure when the thigh and foot piece come off since she didn't like how she felt after the anesthesia from the unexpected wiggle procedure and how sore she was when she woke up. She was afraid Dr. Scott would "yank" the pieces out and she would be sore like last time. He explained he doesn't "yank" the pieces out so she feels better...

He does want us to continue doing whatever we have been doing for her knee since it is looking pretty good. The bad news is that involves putting the additional strut on the fixator when Mary sleeps to prevent her from bending her knee. The problem is the strut makes if very hard for Mary (and thus her parents to sleep). We are taking tonight off though because she is exhausted.

Examining Mary's knee-#1 thing he continues to watch on Mary

It was a good appointment but it was earlier than usual so Mary didn't get her extra sleep in the morning after we do remove the additional strut around 7:00 to give her a break. As a result, she felt so chilled and exhausted after the appointment we cancelled her scheduled PT appointment and she went home and stayed in bed from 10:00 to 6:00. She took an hour nap and rested the rest of the time. She hasn't had a day like that since the very beginning. She fell asleep pretty easily tonight around 9:30 (remember no additional strut to keep the leg straight tonight!)

I am taking a vacation day tomorrow to give her Daddy a break. He has been doing night duty this week and he is exhausted just like Mary!

The pin site cleanings have become very painful and a source of anxiety for Mary so Dr. Scott said we can add saline to the pin site cleaning routine. He said the sites look good. (We tried the new solution tonight and it was MUCH better for Mary.)

Dr. Scott said Mary could bring a friend for the x-ray and she chose a doll her friend gave her

X-ray of left on left and doll on the right

Medicine and Physical Therapy Documents

Since there are two of us taking care of Mary and at times it is in the middle of night when you are exhausted and you can't remember anything, we write down when we give Mary various medicine.

It was also helpful when she was taking a lot of medicine to keep track of the amount of doses in a day to make sure she wasn't getting close to the maximum dose in a day.

We also created documents to keep track of the Physical Therapy we do throughout the day. When we started this process I had no idea we would be doing PT several times (typically 5 times) throughout the day. Initially we were working the same muscle groups in different ways in one session and it was making Mary too sore. We realized just like when we work out (if we were to work out :-) ) that you should pick an exercise per muscle group per session.

Right now we are back to focusing on getting her knee extended as much as possible through "tummy time". Tummy time is where she lays on her stomach with her foot plate hanging off and we massage her leg to help her leg extend as much as possible. We also continue to work on her toes which are once again pretty tight and curled.

Here's a picture of her at her last PT appointment on July 12 just because I like it :-)

Practising standing- 2 months and 2 days after getting the fixator on

Documenting Pin Sites and Wires at 2 months

Below are Mary's pin sites and wires on July 10 (her 2 month anniversary of getting the fixator on). The Physical Therapist pointed out that the sites are tear shaped because the leg has grown and the skin has been pulled. A true sign of progress. No infections currently...

Top pins in her thigh

Pins near her knee- see the tear shape

Pins near her ankle- skin pulling opposite from the above picture

Blue wire near knee - outside leg

Blue wire near knee - inside leg

Blue wire in ankle - outside leg

Blue wire in ankle - inside leg

3 blue wires in foot - outside

3 blue wires in foot - inside

Updated Game Plan

Today we saw Dr. Scott. It had been one week since our last appointment and the purpose was to check to see how Mary's knee is doing. Luckily because she has mean parents she passed and can keep lengthening a little longer. The bar that causes so much discomfort was removed a week ago BUT we put it back on every night and after Physical Therapy appointments for a couple of hours to help get the leg as straight as possible so we can continue lengthening. The good news is it worked.

The Physical Therapist said yesterday that he can't get her leg straighter than -15 degrees but that is fine since we are still lengthening. We could be losing ground and we are not. He did mention her hamstrings are getting tighter.

So the game plan is...keep lengthening until Sunday which should be 6 cm., and on Tuesday see Dr. Scott and get an accurate X-ray. If we are at 6 cm. we will take a break from lengthening for a week. We will see him again a week later to see how well her knee is moving and decide if she can continue on or if we are done with the lengthening process. He said you can go about a week before the bone consolidates too much to prevent any more lengthening especially for Mary since her bone is looking so good.

Interesting tidbit is it's hard to get an accurate measurement because her knee is bent; the CT can't provide an accurate measurement as her leg needs to be perpendicular to the CT (no bent knees).

Dr. Scott thinks we will be done with lengthening and get the annoying thigh and foot piece off the last week of July or first week of August. Mary asked if it will hurt and he said some kids do say it hurts because your bone is adapting. She told me after the appointment she is nervous about getting the pieces off. When I asked her what specifically makes her nervous she said everything.

We verified today her last CT's project the difference if we didn't do anything to be 7.5-7.8 cm.. His goal would be to get to 6.5 or 6.8 cm. from the lengthening process. There is concern you could get more than you need and end up being taller on the original short leg.

There is also another procedure we could do if need be where he goes in and stops the "normal" leg from attaining the height it would have on it's own. I will worry about that possibility once we know what we get out of the lengthening.


He gave us a new bar to put under her knee to help keep it straight vs. the current one we put over her knee. It pushes vs. pulls which might be better for her cartilage. My girl that hates change wasn't thrilled about the new bar because it is different than the bar she has been using (even though she truly hates that bar ).  She would prefer something she hates vs. something that is new...


Dr. Scott said her hardware and pin sites look good but he doesn't like how the struts on her thigh push her muscle up.

Mary has been curious how Dr. Scott broke her bone and put the struts and wires in her leg. Now that they are in and she won't have to do it again she was willing to ask how he did it. The answer was: drilled a couple of holes in her bone then hit it to break the bone and he used a power drill to put the struts and wires in. She was grossed out by the information but she was the one who asked...

Grossed out at description of how the pins and wire are put on

Cleaning Pin Sites

Cleaning the pin sites has to be done daily since they are open wounds and they can easily get infected.

Unfortunately, pin site cleaning is painful to Mary. She currently has 6 pins and 10 thinner blue wires through her leg. Luckily, they do not all hurt every time and the ones that hurt change.

Different doctors have different solutions they want you to use for cleaning: saline, saline/hydrogen peroxide combo, hydrogen peroxide only, etc. I would follow your doctors instructions.

We use the supplies below:

• We found the long sterile cotton tipped applicators from a local medical supply store made it easier to reach the site for the actual cleaning. A bonus was since one end is a wood tip vs. cotton it helps scrape away any crusties if there are any.
• We use regular q-tips since they are cheaper than the long handled ones to clean the actual strut/wire after cleaning the actual sites.
• Use one q-tip per strut/wire.
• We found small trash basket bags at Target to put the used applicators and q-tips.
• We started cleaning the sites at the end of her daily shower but when her knee was immobilized it made the shower too long and we started cleaning the sites in the recliner prior to her shower. (I prefer after the shower because it softens the gunk up.)
• Here's a good site:http://www.youtube.com/watch?v=Tz25yM5UDyI&feature=plcp

I certainly don't recommend you getting a new puppy during the leg lengthening process but it is nice to have a caring pet. One night when Daddy was cleaning Mary's pin sites in the shower, our dog heard Mary was upset and went in and kept licking his hand to get him to stop.

Here is a picture of our dog once again coming to Mary's side when she was uncomfortable during a pin site cleaning. (She's black so she blends into the recliner but she is there!)

Our dog helping Mary during a pin site cleaning

Turning Struts

Since we only have at the most 17 days left of turning struts I thought I would post some tips on turning the struts to lengthen the leg before I forget the details. I know there are parts of this journey I will never forget but it is nice to learn from mothers that have been through this that some details do fade away...

• Turning struts is actually MUCH easier than I thought it would be. It sounds so painful but although uncomfortable, luckily it wasn't painful. Mary did say she could feel the bone being pulled.
• I have heard if it is painful to dose with pain medication prior to turning.
• Most of the struts were real easy to turn initially but as the leg grew and the tension changed they became tighter requiring the use of a 10mm wrench to turn the strut. The turning did seem more uncomfortable towards the end when their was more tension than when we first started turning.
• Mary was fine as long as she had a distraction (aka TV).
• Your doctor gives you a RX for turning the struts. The struts on Mary's fixator were all on different starting numbers once it was put on ranging from 172-195 and the RX tells you what number to turn each strut to daily. 



• Mary colored the columns to match the color of the strut on her leg. Each strut has a number and a different color at the top to help you tell them apart. Above the color and number is an arrow and a plus sign indicating the direction you turn to increase the number. This is the same area the 10 mm wrench fits.



using 10mm wrench to turn strut


• We highlighted the days we surprisingly didn't have to turn a specific strut in pink to bring it to our attention. Yes, there were some days you didn't have to turn every strut - yeah!
• Our RX was dated the day of surgery but we didn't start turning until 7 days afterwards so we corrected the dates to the left to minimize confusion.
• Recommend supplies:


• Yes: reading glasses, magnifying glass, 10 mm wrench from your doctor, and a pencil to mark off what you have done.
• I would check the number the strut was on (they can migrate), check the number I was supposed to turn it to for the day, then use my fingers if possible or the wrench if necessary to turn the strut one rotation. Check the strut to verify you turned it to the correct number. 
• People refer to clicking noises but they don't always click. Actually I don't think I ever heard a click.
• Mary has 6 struts and the whole process took just a couple of minutes. 
• Keep an eye on how many days you have left on your RX when you go to see your doctor for appointments because you may need new RX's along the way. The first RX got us to 3 cm. and the 2nd RX will get us to 6 cm.
• After 60 days of turning, our RX had the struts turning a range of 51-55 times based on built in days we skipped.
• Here's a good link:  http://www.youtube.com/watch?v=BaPsuQxJSKk

5 cm. and Growing!!!

The past two weeks since Mary had the outpatient manipulation were very hard. Mary was continually uncomfortable and stiff. But today we had a long awaited doctors appointment and it was great!!!

The tone was set when we were able to report to Dr Scott that on Tuesday the Physical Therapist was so happy how straight he was able to get Mary's leg, he called her Daddy over to show him. The PT thought it was at least -15 degrees. (It had been over -30 and the goal is less than -20.)

First she had x-rays and although Dr. Scott didn't think the measurement was precise he believes we are at 5 cm. (right on target).




1 cm.

2 cm.

3 cm.

5 cm.

Mary stood for Dr. Scott...look how more even she is!

Then we were HAPPILY surprised to learn Dr. Scott would remove the bar he put on 2 weeks before that immobilized her knee!!!



the dreaded bar across her knee

Mary's smile when she learned Dr. Scott would be removing the bar that has made her so uncomfortable the past two weeks!



Pure JOY when Dr. Scott bent her knee after removing the bar!!!

And our 3rd piece of good news is that Dr. Scott is going to let us continue on for 6 cm. We will see him in one week so he can check the movement in her knee. We have scheduled 3 visits with PT between now and then to help our cause. Once we get to 6 cm. we may stop depending on how her knee is doing. (Our dream goal is 7 cm. since she has a projected 7.5 cm. difference.)

I think I keep saying it but this process is full of constant change. Now we have to adjust to Mary learning to bend her knee again. A very nice thing to have to get used to- don't get me wrong but the body has to learn how to do it again which is a change.

We topped the day off by meeting the other girl who got her fixator on 5 weeks after Mary. Mary has had some very sweet play dates but tonight she said it was so nice to spend time with Victoria because they were in the exact situation. They just sat in their wheelchairs and talked. She didn't have to worry about Victoria wanting to run off and do something Mary couldn't do or that would make Mary feel physically uncomfortable. 



Fixator Sisters

Practicing Walking!!!

The past few days have been better. Mary's sleep is getting better. Friday night she actually slept 6 hours straight! When she wakes during the night she is usually just stiff. She gets up and walks a little then she can get back to sleep pretty quickly. If she wakes up in the middle of the night we do give her Tylenol.

Mary had her 5th Physical Therapy appointment on Friday. They didn't add any new excerises but they helped us get her knee straighter and then they tightened the "trauma strut" that is supposed to keep her leg straight but it loosens every once in a while. We pushed her knee straighter and tightened the strut again by ourselves on Friday night.

The big news is during PT Mary practiced walking. They focused on making sure when she steps her right foot is pointed forward. During the years she has gotten in the habbit of pointing it in so she could rest her shorter left foot on it when she stood.

But now that she has practised walking that's all she wants to do! It's so great seeing her "walk" pointing two feet forward and her saying it feels good to walk. She even told me "I never knew it would feel good to walk and I wouldn't want to stop!"

Mary told me yesterday that she does have a lot of dreams about walking. They don't seem to bother her like the first time she dreamed about walking.

Mary is like a little old lady now a days. She constantly has aches: glute, groin, knee and a few days ago she started feeling electrical pulses that are over before she can say it is happening but they aren't comfortable. The pulses are most common in her toes. Mary loves to have the heated bean bag on her sore muscles. We use ice on her knee when it hurts. Yesterday when her knee was hurting she actually said "I never knew you could hurt so bad."

You could tell she is feeling different because when we went to my sisters to swim she sat on the steps for a long time vs. playing around like she did the previous time.

However, she ended on a high note when she practised WALKING all by herself in the pool. See video below:

When we went to my sister's to swim we had TWO cakes to celebrate our confirmed 3 cm. as of June 12 and 4 cm. that we "should" be at as of last week. (not sure why I can't get the pictures facing the right direction.)

Even though we have had 4 ice cream cakes and I have gained the weight back that I lost when Mary was in the hopsital Mary has lost weight and still doesn't have much of an appetite. I made her a couple more skirts and when I re-measured her waist it was smaller than before surgery. Now that she is in the fixator I was able to measure more accurately how wide I need to make the skirts in order to allow for the fixator and I made them shorter so we can make sure we can see if she is walking straight when she walks.

An advanced sewer recommended snap tape for the skirts. You just sew in a strip of snaps. Since I am such a beginner I really struggled learning how to sew it in on the first skirt. The second skirt was much easier- I still wouldn't show an expert my handy work but it is functional.