Loves to ride but NOT enjoying learning to walk again

The day after Mary's last doctor appointment (Dec. 19) she rode her bike for the 1st time since she got her fixator on (May 10). She has always loved riding her bike and as she admits now- riding her bike is so smooth unlike the up and down walking with a leg length discrepancy.

Mary is having a hard time walking. She told us today that her shoulders, back, leg, heel, and toes really hurt when she walks and walking makes her EXHAUSTED!

Photos at 7 1/2 months: scars, feet and leg

Photos 6 weeks after complete fixator removal and one month after lower leg cast removal:

thigh ring pin sites on 12/26/12 (removed on 8/2/12)

Close up of thigh ring pin sites from above

blue wire scars near knee and ankle on 12/26/12 (removed on 8/30/12)

overhead of 6 pin sites on 12/26/12: bottom 2 removed on 10/16/12 and covered by a cast for 6 weeks, top 2 removed on 11/13/12, middle 2 only in for 4 weeks and covered by a cast for 2 weeks

view from inside leg on 12/26/12

view of foot from outside on 12/26/12 blue wires removed on 8/2/12

view of foot from inside on 12/26/12 blue wires removed on 8/2/12

 

BEFORE: Feet on 5/10/12 day of 1st surgery to get fixator on





AFTER: feet on 12/26/12 after 6.3 cm. lengthening

 
 

overview on 12/26/12 after 6.3 cm lengthening

Officially done per Dr. Scott

We had a doctor's appointment on Tuesday. It had been 3 weeks since our last visit which is the longest we had gone in between visits since we started this process in May.

• The X-Ray Tech answered our question about a small bump Mary has near one of her old pin sites. Her body has just produced too much calcium but the body figures it out and it will be absorbed, used elsewhere etc.
• He even made comments on well her bone and pin sites have healed.

Dr. Scott said:

• The subluxation of her knee we had during the lengthening process is gone.
• He is no longer concerned about her breaking her bone. It looks great.

New growth

• Her ankle even looks great. She is to keep wearing the night splint but we can keep it at neutral. We don't need to tighten it.
• The bone is still bowed.
• Then he watched her walk and said she is ready to use one crutch only. Mary was thrilled!!! She can finally carry something herself. She has used one crutch the past two days and her leg is VERY tired by the end of the day.

• He said she could actually use a cane instead of one crutch which might be better for her gate but Mary is pretty against using a cane. Kids use crutches, but not walkers and canes. We believe Mary has earned her right to make some decisions!
• Dr. Scott thinks she will end up being 10-15 mm. different.

• He wants her Physical Therapist to play around with a shoe insert to make up some of the remaining difference.
• He mentioned we can do the procedure that stops the growth on her longer leg in a couple of years. Her Mom and Dad think Mary can make that decision.
• He wants to see us in 4-6 weeks, then we assume our appointments will get further and further apart. He did tell Mary he will probably see her until she is 18.
• Then he shook Mary's hand and said the leg lengthening process is officially over!
• (I still don't think it's officially over until she can walk without a device...)
• Video of Mary walking with one crutch...

Over it!

Mary had a hard time on Sunday afternoon. The duration of this experience and ongoing lack of independence got to her. She is still using two crutches. I just empathized with her, it has been a long, hard time but we are so close to the end...

I only recall one other moment like this which I think is amazing since we are now in month 7. The other time was on August 24 when she had her 3rd infection and we were having problems with antibiotics.

A big change is that she was ready to take down the leg lengthening mementos in her room. She told me she is ready to move on. It was actually part of a huge room cleaning that I think is just part of growing up. I am keeping the leg lengthening things so she can decide later what she wants to keep. She did ask for a picture from the day she got her fixator on for a frame she has in her room.

New Physical Therapy Regime

Mary is doing a whole new level of PT now a days. Her Physical Therapist is happy with the range of motion in her ankle. He assumes the splint she wears at night is helping. Regaining her upper leg muscle strength is the focus now. We are back to doing more exercises at home.

I am also focusing on massaging her scar tissue. Her therapist mentioned this back in August when she had the thigh and foot plates removed. Moving the scars up and down, side to side, and in circles to help prevent it from attaching to her bone, etc. is the goal. Some kids can have pain later if the scar tissue attaches. There is surgery that can be done if need be but it would be nice to prevent any future surgeries IF possible...

Mary is still on two crutches, and it is difficult to break her old habit of resting the left foot on the right foot instead of standing with both feet on the ground pointed straight...in time. Hopefully, as her leg gets stronger it will feel better to stand "correctly".

leg presses

one legged leg press

I like this picture, shows the length we have gained!!!

PT gave us an exercise band to pull on while she straightens her leg

One legged "bridge"

2nd picture of bridge

"clam shell" - lifts top leg up

video of stationary bike one day after cast was removed!

Her leg is free except for at night...

The orthotic guy recommended a night splint for Mary to wear at night to keep her ankle range of motion. It was a great idea because it wasn't custom like an AFO so no extra appointment was needed. It arrived today and ironically I have one just like it for plantar fasciitis. We can be twins.

Mary is still on crutches. She says he foot gets sore from weight bearing and her shoe bugs her at times as well.