No Fixator! No Cast! Her leg is FREE!!!

We saw Dr. Scott today and he liked Mary's knee, how well her bone looks, and how she was "walking" so he set her leg FREE!

He just wants us to get a resting brace for her to wear at night to hold the range of motion in her ankle.

His only instructions were Do Not Fall! He explained she is not like an eggshell but still doesn't want any major injury.

He would love for her to use a deep hot tub to walk around and work on her posture. He said not to measure the length gained yet because it takes time for the posture to work itself out to see the length gained. He also said it will probably take a year to regain the lost muscle.

He added there is no reason her foot should turn in, it's muscle memory. She always stands with her shorter leg on her right foot. She needed to when there was such a difference but now she just has to break the habit.

Mary had her heart set on a red and white striped cast like a candy cane so she was a little disappointed she wasn't getting a new cast. All three of us were surprised we walked out with nothing (no fixator, no cast, no nothing) on her leg. Literally, we didn't even think to bring a sock or shoe!

We tried to go shopping tonight for a shoe but her foot was too sensitive she couldn't put a tennis shoe on her foot. 

Cast was so thick it was hard to cut off- makes sense why it never cracked even though they had made a window in it

Daddy trying to clean her leg

initial unveiling

 

Trying to take advantage of having the cast off before we knew she wouldn't be getting another one on

New growth just has a small indention still 

All of the other marks are from the 6 pins she had in her bone

Leaving with just a cast "sock" on since we didn't bring a sock or shoe for the poor girl!

Our version of a deep hot tub :-)

Tadah! Length will look better once her posture has had time to correct

Come a long way Baby!

It was nice to look at pictures and realize how far we have come.
  

Day 1 back on May 10


It's also nice to acknowledge what's behind us:

• pin site cleanings
• infections
• less looks in public

The other exciting thing is Mary wore her regular school uniform last week. She was wearing long skirts I made her to help keep the pin sites clean- not sure if they worked too well since she had several infections- oh well! Mary was able to wear jeans on Saturday so I went through her closet and removed all of the modified clothing and put her regular clothes back.


1st time wearing her normal uniform: 11/15/12

 

able to wear jeans over her cast 11/17/12

Mary got her knee to 0 degrees at PT on Thursday! I was too slow with the camera to catch the truly excited look on Mary's face. This is monumental. At one point she was at -20. Now that she can get it to 0 degrees her Physical Therapist said she will progress quickly once the cast is off.

Picture from 8/23/12 measuring -20 degrees

Picture from 11/15/12 FINALLY measuring 0 degrees. This photo isn't from the actually measuring time but I think it shows the gist.

 Typical to our whole fixator experience, things come up. Mary's heel was "burning" under her cast the first night home so she was off to the doctor the next day. He said it was a "hot spot" and they created a window. She has been comfortable ever since except for the normal itching that goes along with a cast.

The cast may "crack" at some point because of the window but he didn't want to give her a brand new one yet since she was under and he was able to get her foot in the position he wanted her foot at the hospital.

making the window

window

It's off!!!

Mary's external fixator was removed today. It was replaced by a cast from right under her knee, down to her toes. Since the weather is colder and she stubbed her toe recently, Mary requested more toe coverage like the 1st cast she had.




morning of removal - back




morning of removal - front






Top pin sites - in for 6 months

 



2 new pin sites- 4 weeks old

 















When I anticipated this day 6 months ago I assumed it would be a day of huge celebration and although I do appreciate how far we have come and how close we are to the end I don't think I will be celebrating until her leg is completely bare and not celebrating 100% until she no longer needs crutches in order to walk. We are almost there!

We gave cookies to all of the departments (Child Life Specialists, Pre-Op, Anesthesiologists and Recovery) we know at Children's to say goodbye since this is our last expected procedure. The nice thing about having so many procedures is that we do know a lot of people there.



Writing thank yous before leaving for the hospital





Traditional photo entering for a procedure



4th anesthesiologist but a repeat for the family - little sister had Dr. Gail for a minor procedure 4 years ago

when we entered recovery- not awake yet

6 pin sites and the new growth

close up of new growth



fixator off, longer cast on



"shoe" for cast



Mary asked Dr. Scott to sign her cast





Dr. Scott drew a tibia and labled the parts that Mary grew on her own and the part he helped her grow



Mary's recovery was only 90 minutes since the procedure was short (45 minutes) and she even snacked on the way to the car but...

Stomach started hurting in the car, and wasn't feeling great when we arrived home



Feeling better!






















Getting into bed tonight Mary said her leg didn't feel very different since she still has something on it. She was very happy that since Dr. Scott said her leg looks great and she can bear weight on it. She isn't released to do anything too wild but Mary just wants to be able to use crutches vs. a walker.

We see Dr. Scott in two weeks and he will change her cast one last time. At least that's the plan.

Removal Date is Set

Almost 6 months after the exact date of getting the fixator put on Mary will have her fixator completely taken off on November 13. She will have a new cast from as high up under the knee as they can get it to down on to her toes. We do not have an estimate for how long the new cast will be on. Dr. Scott did tell Mary she would be done in December. (PT will continue on though.)

Mary did start another round of antibiotics today. The normal redness and/or drainage haven't appeared BUT it looks like an infection is "festering" under the skin near the 2 new pins.

Mary was able to get her knee to a -4 at PT today (goal is 0). She had been backsliding the past couple of times so this was good news.

In general, I would say she is definitely starting to put more weight on her left leg. I think using crutches all the time has helped getting her to bear weight on her left leg.

The removal date is very exciting and long awaited but as we suspected it's a little bitter sweet. Mary has met so many nice people through this experience. She told me tonight just as having a shorter leg was part of who she was before, the fixator has become part of who she is now. 

Halloween

Mary and her good friend starting planning their matching Halloween costumes in May when Mary had her fixator put on. They wanted to be twin gymnasts and Mary would be the one who fell off the vault doing a double flip...since it was the Summer Olympics this year we used the American team when they won the gold as our model. Here's Mary as McKayla Maroney (thus the head tilt):

• We are waiting on the scheduler for the November surgery date to remove the fixator completely.
• Mary is now officially using her crutches everywhere now that she started using them at school last week.
• Infection is still brewing but redness and drainage have not appeared yet. The area is swollen and sensitive.