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!
Sunday, December 30, 2012
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!
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!
Wednesday, December 26, 2012
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:
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| thigh ring pin sites on 12/26/12 (removed on 8/2/12) |
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| Close up of thigh ring pin sites from above |
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| blue wire scars near knee and ankle on 12/26/12 (removed on 8/30/12) |
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| 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 |
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| view from inside leg on 12/26/12 |
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| view of foot from outside on 12/26/12 blue wires removed on 8/2/12 |
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| view of foot from inside on 12/26/12 blue wires removed on 8/2/12 |
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| BEFORE: Feet on 5/10/12 day of 1st surgery to get fixator on |
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| AFTER: feet on 12/26/12 after 6.3 cm. lengthening |
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| overview on 12/26/12 after 6.3 cm lengthening |
Wednesday, December 19, 2012
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.
- 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.
- 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.
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| New growth |
- 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...
Thursday, December 13, 2012
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.
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.
Friday, December 7, 2012
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".
video of stationary bike one day after cast was removed!
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".
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| leg presses |
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| one legged leg press |
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| I like this picture, shows the length we have gained!!! |
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| PT gave us an exercise band to pull on while she straightens her leg |
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| One legged "bridge" |
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| 2nd picture of bridge |
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| "clam shell" - lifts top leg up |
video of stationary bike one day after cast was removed!
Monday, December 3, 2012
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.
Mary is still on crutches. She says he foot gets sore from weight bearing and her shoe bugs her at times as well.
Tuesday, November 27, 2012
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.
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.
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| 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 |
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| Daddy trying to clean her leg |
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| initial unveiling |
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| Trying to take advantage of having the cast off before we knew she wouldn't be getting another one on |
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| New growth just has a small indention still |
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| All of the other marks are from the 6 pins she had in her bone |
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| Leaving with just a cast "sock" on since we didn't bring a sock or shoe for the poor girl! |
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| Our version of a deep hot tub :-) |
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| Tadah! Length will look better once her posture has had time to correct |
Sunday, November 18, 2012
Come a long way Baby!
It was nice to look at pictures and realize how far we have come.
It's also nice to acknowledge what's behind us:
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.
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.
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| Day 1 back on May 10 |
It's also nice to acknowledge what's behind us:
- pin site cleanings
- infections
- less looks in public
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| 1st time wearing her normal uniform: 11/15/12 |
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| able to wear jeans over her cast 11/17/12 |
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| Picture from 8/23/12 measuring -20 degrees |
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| 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. |
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.
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| making the window |
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| window |
Tuesday, November 13, 2012
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.
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.
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.
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| morning of removal - back |
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| morning of removal - front |
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| Top pin sites - in for 6 months |
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| 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.
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| Writing thank yous before leaving for the hospital |
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| Traditional photo entering for a procedure |
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| 4th anesthesiologist but a repeat for the family - little sister had Dr. Gail for a minor procedure 4 years ago |
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| when we entered recovery- not awake yet |
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| 6 pin sites and the new growth |
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| close up of new growth |
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| fixator off, longer cast on |
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| "shoe" for cast |
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| Mary asked Dr. Scott to sign her cast |
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| 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... |
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| Stomach started hurting in the car, and wasn't feeling great when we arrived home |
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| 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.
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