Phase 2

We had an appt. with Dr. Scott yesterday. It has been 1 year after getting the cast off after the external fixator. 

It was a very thorough exam and he took a lot of time with us.

A quick summary is she is looking good but he would like to do 3 additional procedures to help her but none of them are as major as the leg lengthening.

1. Her left foot is C-shaped. So he will go in, cut the bone, add a "wedge" to her foot and hold it in with a pin. This will straighten her foot, make it a little longer and more comfortable in shoes.  (I assume it will reduce her shoe size discrepancy which is currently 3 sizes.) 

The foot procedure slows you down. It would require 4-6 weeks in a non-weight bearing cast below her knee. A second procedure is required to take the pin out around week 4.

2. She is becoming "knock-knee'd" again. So he will do an "8 plate" which essentially is going in and stopping one side of the knee from growing so as the leg continues to grow the leg will straightening out. This procedure is very common among kids with FH. 

An 8 plate is an outpatient procedure that requires 3-4 weeks to get her range of motion back and a second procedure to remove the 8 plate at some point. From what I have seen that is months later. The 8 plate procedure is "easier" than the foot because of mobility and length of time it slows you down.

3. Mary currently has a 12 mm. difference and it is projected to be 14 mm. (It was originally projected to be 7.5 cm. so we did achieve a lot (6cm.) with the leg lengthening. 

As a result he will stop the growth on the right side. This procedure we did know would be coming at some point. The first two (foot and 8 plate) were new to us.

His goal is not to make her exactly even but closer to 10 mm because 10 mm seems to be more comfortable in the long run than 14 mm.

Timing: He will see us in 3 months to see how she is doing and take a x-ray of her hand and foot. Since the hand has 30 points, there is a lot of data in one place to determine her "bone age"- meaning how much more growing does she have in her. Is she close to her mature height and the growth plates are closing or are they open because she has a lot more growth ahead of her? He would like to do the procedure on her "normal" leg when her bone age is 12.

He would do the foot and knee procedures at one time - most likely this summer but we will confirm at the next visit in 3 months. These procedures should be done sooner than later. 

He would do the procedure on the "normal" leg a year later. The later the better for this procedure.

He will also be considering removing a bunion that has developed on her left foot as a result of the curved foot at the same time as he adds the wedge to the foot to remove the curved shape.

Unfortunately, he said to continue PT (we haven't stopped since June of 2012!!!) and to do what we did when we noticed she was backsliding in October as a result of a growth spurt- increase the PT.

He did say he would throw in fixing some of the deeper scars for "free". You know that means you have paid too much when a surgeon starts throwing things in for free. :-)

The positive of the visit is he did officially say we won't even have to consider a 2nd lengthening. That would have been hard to decide. It was successful but not sure I would sign up to do that again.

Pictures from a CT scan on December 6:

Still recovering and always will be...

This month (Nov. 2013) marks a year since Mary had her fixator completely removed. This was the time frame Dr. Scott said she would probably be completely recovered from the leg lengthening that starting in May of 2012.  

Once school started this Fall we started spacing PT out every two weeks and I assumed we would be completely done at the end of this year. Lately we have had some scheduling conflicts so it probably has been a month since Mary has been to PT- although she still does PT at home every night. A week ago we started noticing Mary returning to "toe walking" on her left leg. We thought she hurt it or something. She finally admitted her Achilles is really tight. 

She saw her Physical Therapist today and he said her Achilles will always be tight because of the leg lengthening and she may have had a growth spurt exasperating it. We just need to go back to the nightly hamstring and Achilles stretching and he gave her some stretches to do in the morning too. 

We are going back to more frequent PT visits to help her regain flexibility. 

We see Dr. Scott again in December. 

I am getting better at accepting that this is a lifelong situation for Mary- not the one big procedure and then it's all fixed situation that I mistook it to be.

"Fixator Lamp"

Mary turned her fixator into a lamp...

Yoga

We have started taking yoga again from the same teacher from before Mary's leg lengthening and she was so excited to see how much Mary has improved: strength, flexibility, etc.

Dr. Appt. 8 months after removal

We saw Dr. Scott on Wednesday. It has been 2 months since our last visit. All is well:

• She had a standing X-ray and the current rough estimated difference is 2 cm. 
• Dr. Scott said the difference doesn't grow much at this age. (Unlike from baby to age 9 where it grew from 1.5 cm to 5 cm.)
• She will have a CT scan in 6 months which will give a much more accurate measurement of her actual difference.
• He mentioned for the 4th visit in a row that in "a year or two" we can slow the growth of her right leg to make her legs even closer in length. That is a MUCH more simple process than growing the shorter leg.
• He said she can wear a lift on her shoe if it makes her "feel or function" better.
• He likes the way her foot looks.
• He thinks we are close to the end of PT and had a good suggestion of starting to space out our visits more.
• Next visit is in 6 months. WooHoo!

CT Scan Right before leg lengthening (laying down, not standing)

Standing X-Ray 8 months after removal

What a Difference a Year Makes



First Day of School 8/21/12: sitting on the bench so she wouldn't get too tired

Last Day of School 6/6/13

Dance Recital June 2012

Dance Recital June 2013

A year ago seems like a lifetime ago...

Doctor Appointment 1 Year after Getting Fixator On

We saw Dr. Scott today. He said her walking is the best he has ever seen her and I would agree.

We had two comments/questions:

• Whenever something bugs her it is actually the top of her foot.
• Her knee appears to be valgus (outward angulation)to me and the PT. Dr. Scott checked it out and just wants to watch it for now. He said it's an "easy" fix if we need to do something but he wants to just watch it for awhile. My take is he wants her to enjoy the summer.

I don't know for sure but I believe he would do an eight plate procedure that I have heard about. Per my quick internet search it is a 1 hour outpatient procedure that has a 2-4 week recovery and doesn't require PT. The patient is weight bearing immediately after the procedure. I have heard good things about the process so maybe it is "easy" as he says.

We will see him in 2 months. At that point we will get a standing x-ray and start looking for alignment.

Ironically, at lunch today her knee was bugging her so she had to stop playing basketball with her friend. Maybe it was because they were poking at her knee at the office visit. I am still getting used to the idea that the leg lengthening was not a final fix but this process is a life long journey.

One Year Anniversary

Today is the one year anniversary of Mary's surgery to get the fixator on. At this time we were still waiting at pre-op and getting ancy about when we would ever be called.

Mary had talked about marking the occasion. I thought we could invite the two local girls to celebrate with us but the two of us have a Girl Scout event this weekend so we will not be around. The anniversary kind of snuck up on the 2 of us.

Mary's doctor has just requested another 20 visits to Physical Therapy. Once we are done with PT I am willing to say the leg lengthening is officially over but I have learned this is a life long process. Something I didn't realize until this year from learning from others ahead in the process.

Before Lengthening 2012

After Lengthening May 2013




Before Lengthening 2012

 



After lengthening May 2013



4 1/2 months after removal

We saw Dr. Scott on March 26 (last Tuesday) 4 1/2 months after her fixator removal:

• He mentioned he could clean up Mary's scars but at her age it would require anesthesia (if she was older it would just require a bunch of shots) and it is optional. I am not inclined to do this especially as a solo procedure. But we will see if it is important to Mary.
• The plan is to get a CT scan once Mary's knee is straighter so he can measure the new difference between the two legs.
• He is suggesting that in two years we have a final procedure to stop the growth on the "normal" leg so the legs get more even. This is a much simpler procedure than a lengthening but I don't know any details about it. Again Mary gets to decide what we do if anything.
• Mary is still holding her body asymmetrically but is making a ton of progress.
• Her knee is sitting forward again which is helping get her knee straight but we are working on her tight hamstrings. Her leg will be straighter once her hamstrings aren't as tight.
• I asked about the bump on her lower leg where a pin was and he believes it just overfilled in.
• If we do the procedure in 2 years he could clean up the scars and fix the bump all at the same time.
• He said it takes time but it continues to get better. I have seen that lately. More and more progress of walking smoother.
• We are continuing with PT 2 times a week and will see him again in 2 months.

Pictures of her scars at the moment...


Full view of lower leg



Scars from top thigh ring

Upper incision and a scar from a blue wire

Lower incision and scar from a blue wire

"bump"- overfilled in

Before and After

Today at PT Mary was using a machine they are testing out. The machine requires you to use your balance to play games. It gave me an opportunity to take a picture of the leg lengthening success (photo on right).

Before leg lengthening

After 6.1 cm leg lengthening

Feb. 25, 2013

Today is the one year anniversary of my conversation with Mary where I explained the leg lengthening procedure to her. You do forget some things about the process but that conversation will be something I always remember. It was a difficult conversation but the time leading up to it was probably worse than the actual conversation. It does seem like forever ago though.

Dr. Scott switched practices last June and his new practice wanted to introduce him. Dr. Scott asked if they could write about his work with Mary. The article is below:

Returning to Activities

Mary started basketball last week, and her modern dance class this week. I think she is very happy to be returning to fun activities. 

She also got a bigger bike for her birthday since she has outgrown her old one. 

Lots of good changes.

Her ankle and sometimes her knee hurts from her new activities and she still limps quite a bit in general so PT continues. PT is very physically demanding it actually makes her hungry. :-)

"She's walking really well!"

We had a doctors appointment today. It's been 6 weeks, the longest we have gone between visits since Pre-Op in May.

Dr. Scott examined Mary and asked how her leg feels. She admitted that at the end of some days she is sore (knee, or ankle, etc.) but not at the end of every day. Mary had been complaining about her foot but a small shoe seems to have been the culprit. He said her knee is wobbly and her ankle is stiff. Her knee will probably improve but her ankle is probably the way it will be. He said nothing is bad and he is happy with how everything is looking. 

Dr. Scott did confirm Mary does have all of her bones but not her ACL and other ligaments which means her range of motion in her knee and ankle will be different than if she didn't have FH.

He said in a "year or so" we may consider stopping the growth on her "regular" leg to make up the final leg length difference. At that time he could work on her scars and straighten her foot if need be.

He said her foot can straighten but when she is tired she will point it in. 


He is clearing her to do more activity because the more she does the faster she will recover. Her muscles are week but she won't hurt anything. He did state that with longer lengthenings it can take a full year after everything is off to recover.

The Physical Therapist that works with Dr. Scott will reach out to Mary's actual Physical Therapist to advise to start working on ankle flexion to see if that will help her gate.

Mary no longer has to wear the splint at night but he suggests an ankle brace for support during basketball so her ankle doesn't turn in when it gets tired.

Our next visit is two months away...further and further spaced out!

But the best part of the appointment was when we were walking out and the parking attendant who has seen Mary over the past 8 months but isn't the most outgoing person called out to us that Mary is walking very well. When I was actually in my car paying to leave I thanked her for the comment. She said she remembers when she used a walker and told me "she is one tough girl"! It was a very nice comment from a "stranger" who we didn't even realize was cheering us from the sidelines.

Fixator Back Together

Mary was given all of the pieces of her fixator as they slowly came off and on Friday she put it all back together again. 

We initially thought it weighed 10 pounds and even when I lifted it up on Friday I was sure it weighed at least 7 pounds but the official bathroom scale weighed it in at 5 pounds. We didn't get to keep any of the pins or wires that went into her body.

She plans to make a lamp out of it for her bedroom.

re-assembled fixator

Trying it on for kicks

No more crutches!!!

This past weekend was cause for celebration for two reasons:

1) We had our first vacation in a year. We went away for the holiday weekend and had a great time. 

2) While we were away even though we did take Mary's crutches with us she didn't use them the whole time we were gone! Even though we were trekking around a lot doing tourist things she was able to go without them. Yes, she was tired and sore at times BUT her walking has become much more smooth vs limping. 

So when she returned to school on Tuesday she was crutch free!

She had been using only one crutch for the past month.

Her Physical Therapist has approved the crutch free move and has approved her to do some more activities but still no running allowed. 

Getting Stronger

At the beginning of January with the support of a friend who has been through 2 lengthenings Mary set her crutches aside at home and started powering through walking. It wasn't comfortable at first but she has gotten so much stronger over the past couple of weeks. She still uses one crutch at school but now she is trying to go without a crutch more and more in public. Her physical therapists have to keep making her exercises harder and harder. I have noticed how much more flexible her hamstring is. 

When she tells me something is uncomfortable after walking a lot it's always her ankle and heel more than her leg.

Lots of progress but still not officially done...yet!

"Athlete" of the Month

Mary goes to the Sports Medicine Center for Young Athletes at the hospital for her Physical Therapy and they selected Mary as the "athlete" of the month for January.

She has been going there since May and they expect 12 more weeks. They have released her to do basketball drills but no scrimmaging or games yet.

Mary loves her two physical therapists and will be very sad when she no longer sees them- not sure she will miss the actually PT though...