Week 8 begins ...

Numbers with knee extended went up by 5. Everything else with the exception of the maximum measure of her left calf stayed the same. Knee extended numbers are the important ones so this is good.

Happy Halloween!



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Back to Normal

So Gracie's derelict stage is over. She is doing her work very well and not giving me any trouble. Because of the 20 minutes of weight bearing exercise, I have not tried to sneak any additional time in. I told her she can do two of these TV sessions over each of the weekend days. We'll see after next week if it makes much of a difference.

Doing our leg strengthening exercises:

Alls Well

Gracie did fine today. Added the 20 minutes of standing on one leg while watching TV (other leg up on stool.) It seemed to work - I had to keep gently pushing the weight to the other side. She LOVED it due to being able to watch TV. We were able to get all our time in - Isaac was late getting to school again which set us back by 20 minutes. We were able to get in 15 before school and made up the 5 in the middle session.

Grace was invited to a bday party. It was with great trepidation that I heard the invite - ended up its a dressup party so hooray! She'll not be able to wear dressup shoes but she'll have fun anyway. What a relief!

Sweet!

Wonder what Cub fans do in October?

Back to Normal

Did exercises as planned and wore the immobilizer to bed. Everything went fine.

Remembered an exercise we learned from Trish who does the Kineseotape (sp?) seminars with Audrey Yakasawa. I ran it past Mary and she thinks its a great idea. So we'll start that on Thursday. Basically, she gets to stand in front of the TV with her right foot up on a little stool and her left leg doing the weight bearing for 15 to 20 minutes. Since my kids only watch TV for 20 minutes every nite and for a movie on Saturday nites, she LOVES to do this.

Grace revolts!

Well, not exactly. But she was doing such a terrible job this afternoon that I revolted! You would think her practice walking was just a leisurely stroll. She ignored my repeated requests that she do it right. So I stopped the timer and told her I'm done for the day. I refuse to spend 15 of the 20 minutes telling her to look at her feet and do it right.

She got quite upset. I really fanned her into a frenzy when I told her I was going to send email to Mary telling Mary that Grace was going to quit. OMG. It was quite interesting to observe. I even rejected her pleas to let her do her exercises until she would tell me how she planned to do them better.

Then I took her outside and we started all over again. And, I'm happy to say she did them very well. We even got in 5 extra minutes over the day - not bad considering this morning we were running late and had to make up 5 minutes later in the day. And yesterday we got our entire hour in.

Week 7 Begins

The numbers keep getting better and better. If this is linear (and it has been so far - a solid 5 degrees added each week) then she should be at her goals in 4 weeks. Then I think (I'll have to check) two more weeks in the casts and we switch to braces. So that would be a total of 13 weeks but dont want to get our hopes up so will drop this here.

This week we did not need the wedge under her left cast. Hooray! A very good development. And, she finally moved on her knee extended measurements - the knee immobilizer worked like a charm.

Our instructions are to continue the practice walk but go very slow, do the same back and forth exercise with her right foot up on my knee so as to force weight bearing to the left, and do the leg lifts but keep her foot on my knee and lift the knee towards the ceiling.

Gracie doing her rhyming homework in Room 4:


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Missed Three this week

We missed two Saturday - I just couldnt get them all in AND be ready for a party that ultimately numbered 48 people.

Good we did all that extra work over the week. In four days plus the two on Friday we did 4*3*5 + 2*5 = 70 extra minutes. We missed 60. So we'll be 10 minutes ahead for the week not even counting the fact that we did our leg exercises outside our 60 daily minutes.

So all in all pretty good tho I would have liked to go in with more extra.

It occurred to me today to make sure she gets to bed EARLY every nite since growth hormones are present only when they sleep. She has to be woken up in the morning so its not like she is getting all the sleep she needs. Anyway, going to try it starting tonite. Getting them into bed by 8:30 is a good and worthy goal (lol) but a difficult one.

UGH!

Grace was not feeling well this morning - I knew there was trouble when she wouldnt wake up. So we missed the first one and then couldnt make it up due to a party we are hosting Saturday. We are going to try and make it up on Sunday. But we did get ten extra minutes in. So we'll see how it goes. It wont kill us to miss that one - its just that I wanted to go in perfect just to see the numbers.

The trick is going to be making sure we get in all three Saturday since we are having a Halloween party for 45 people and we are NEVER ready.

6 Weeks In: How we Feel About the Casts

Grace on her way outside for school recess

Well its been 5 entire weeks and we are into our sixth week. I look back on how I felt about this casting and how it would affect her and its all been worry for nothing. Tho I'm sure we'll both feel bad the first party she gets invited to that requires uncasted feet (eg. bowling - tho she might just be able to bowl - we'll see on that if necessary, swimming, roller skating). Luckily she went to a roller skating party a few days before starting the casting project.

I do see a LOT of people staring out of the corners of their eyes at her casts. Very few people will remark on them though. Just stare and look away if we catch them. That makes Gracie laugh. She has quite a sense of humor.

Kids do it out and out. The biggest outwards reaction of kids is they love her cast shoes. Her teacher prepared the class for her casting by talking about how even if you look different with the casts you are still the same inside. Both the same to what you were before casting and the same as the rest of the class. Now it seems kind of like one of those things that goes in one ear of a kid and out the other. But G took to repeating it to me right before she went in for casting and when we first left Childrens with her casts on. So it made a HUGE difference to G.

Every Friday her teacher gives Grace a folder with her "On The Go" journal that she takes with her (a "special" journal) and other class work and reading material. She has it in a special purple folder which G picked out. I drop G off late for school on Mondays - something she hates. But she LOVES the attention Mrs. Kuhn gives to her new casts. She will ask her what color (if she is not wearing shorts) and then make a comment or nickname her something with the colors. Like when she called her Her Bumblebee when she had yellow and black casts. So Mrs Kuhn has been FANTASTIC and a large part of why G feels less self-conscious than you think she'd be.

I used to feel self-conscious about them when we started. I didnt like kids at school out and out staring at her. Even turning around when they walked past us. But the school kids have become used to it so that doesnt happen anymore. And G is talking so much all the time that she doesnt notice it too much when it happens outside of school. She was somewhat concerned that her beloved Auntie 'Chel didnt know about the casts when we were supposed to go to MI for the weekend. But Michele was wonderful about them and we all forgot she had them on.

She had to drop soccer - no casts allowed - which bothered her. But not as much as I thought. She has shown some concern that in the Spring when she is in braces and can play again that she'll not know what to do as she was transitioning from 4 players on the field, no ref, no nets to regular playing. I try to reassure her that her brother and sister can bring her up to par very quickly. Thats the best I can do. Sometimes its enough, sometimes she obsesses about it. But that is Gracie.

Other than that, she seems to do everything she wants to. She plays in the playground with her friends at recess. She never claims she cant do anything because of the casts. She does gym at school. She even races her friends - glad I cant see that as it would kill me if she fell.

So all in all, its just become "life as usual" but a very large part of that has to be attributed to our fantastic Mrs. Kuhn. Kudos to her!

Another thing ...

I am going to start her off with two sets of 10 of her standing on left leg exercises and ending with three sets of 10. This is outside the 25 minutes so we will actually get in 25 minutes of practice walking.

I'm really bored (thats a "b" word the kids are not allowed to use in my house) of walking next to her looking at her feet. But it is really a lot easier doing it outside. Even if its turned cold now. She gets bored once in a while and will kick into a funky little walk. But she'll stop when called on it. Usually.

No problem with using the knee immobilizer.

Tonite ...

Gracie wanted to spend her walking practice time walking around a table in the dining room. We went around at least 50 times.

Another extra 15 minutes! Hooray!

Did it again! 5 minutes extra each set for total of 15 minutes extra for today. Almost an entire session. And the best thing about it is she doesnt even notice its five minutes longer.

Sneaky!

I'm adding in five minutes per session without Gracie knowing it. I want to see how it affects her range measurements. If you miss 3 sessions over the week then that is 18 sessions * 5 minutes gives you 90 extra minutes. That is 1 and a half days of extra work. It even makes up 4 - almost 5 missed sessions. And we rarely miss 3 sessions. So we'll see. I'm excited about it.

And the logic behind it - dont want to burn her out - is she is never complaining at the end that she wants to quit. She just wants to know how much time is left.

She wore the knee immobilizer no problem last night.

Note: Got in all three sessions today with five minutes additional time for each. No complaints from Gracie. So this is GOOD! Between today and yesterday we have put in 30 extra minutes!

Week 6 Begins

We were out in SUPER fast time today - 10:00. There was a visiting physician from Lithuania with her interpreter which was very interesting. Gracie very quiet today - she ended up staying home afterwards with a headache and sore throat.

Well Grace continues to improve in her range in two of her four measurements. She seems to be stuck at -10 R1 and -5 R2 when taken with her knee extended. To address that Mary has instructed me to put a knee immobilizer on her at night. Every other nite if she has trouble sleeping.

So far she has gained 15 degrees in all four measurements. I was questioned as to whether or not we had been doing our exercises - we only missed two and that doesnt count the extra time we tagged onto most of the exercises - because she went down .5 centimeters on all her girth measurements. Mary thought it must be the measuring tape as it is highly unusual to lose the same amount in all measurements.

Mary thought her feet hurting her was probably due to being on them too much while cleaning up. I agree. But Mary didnt like something she saw when seh was walking without the casts. This was corrected in today's casting apparently. Her arm was up at the time and now its down again.

Exercises for the week: continue practice walking, standing on left leg do 10 leg lifts of the right leg onto my knee (I'm sitting on the ground), and standing on left leg with right leg on my knee do "up and back" exercises.

I fit in three sessions today. Gracie didnt realize this so went ahead. Plus did ten extra minutes by tagging on 5 minutes to two of the sessions.

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Sore Feet #2

Again, at nite, Gracie complained of sore feet. Not as bad as before but still sore. She wished someone could rub them. Will bring it up to Mary tomorrow.

Sore Feet

Gracie complained tonite that she had sore feet. I asked her to point out specifically where it hurts her but she claims both of her feet ache her all over. I used the hair dryer on cool to soothe her and she seemed okay after that.

What is a casting session like?

This is us in one of the rooms at Childrens. She has all her work done in this room.


There is a fixed routine to the casting sessions. The biggest variable is in the time between activities.

We start out by having the casts cut off - usually by Issac. He is the best - very gentle, always kind, and an EXPERT at his job. Grace has been burned by a PT removing her cast and became very apprehensive at cast removal as a result. But Issac is SO good she is NEVER afraid anymore. He uses a machine with a vacuum attached. And the child can be supplied with headphones to deaden the noise if they want. Issac asks her what colors she wants and he leaves.

Issac cutting off the casts:


After removal of the cast, I wash her legs in the big sink they have in the room. Then I dry them and carry her back to the table. I clip her nails if I remembered to bring the clipper.

Washing her feet:


Then we wait.

Mary, Brigid or Barb come in and take her measurements, recording them in her file. Besides range, they test strength and measure for atrophy or development. She walks for Mary in the hallway to see how her gait is changing. Then back into the room and we wait.

Issac will then come back in, put pads on her anklebones and the back of her foot. Then he wraps her legs in fluffy cotton like cotton batting.



Mary and Brigid or Barb come back in and they work with Issac to cast her. They plaster her.





Then they wrap her plaster casts in fiberglass. We wait for it to dry.

Then one of them comes back in and checks out how much of a sponge wedge she will need under her left (affected side) heel to make her flat. Usually this is Brigid. Brigid cuts out the sponge and tapes it to her foot. Then she wraps her in more fiberglass. We wait again for it to dry.

After it dries, Mary comes in and sees how she is standing in order to determine how much padding to put in each cast boot. Then she has Grace walk for her and decides the exercises for the week.

We get ready to leave while Mary types in and prints out our exercise plan for the week. Then we are done.

Week 5 ...

begins. Issac was not there so it took longer than usual. But we still got out in decent time.

Grace continues to make progress - tho this week not as much as I hoped for. Mary told me she is doing better than expected at this point and her progress for this week, tho less than usual, is considered very good. One great thing - her gait is greatly improved. Mary was VERY happy with it.

I'm wondering if her slower progress is due to our not doing exercises on Saturday and Sunday. We were in Michigan at my brother's place and I didnt want to seperate her out from the other kids. We did manage to start a set but she was so sad about it that I let her go. Maybe I should have hardened my heart to her? Well whats done is done.

Another thing. We were not doing exercises on Mondays. I had been in the habit of not doing exercises with her on days she had therapy and I automatically swung into that mode. This week and last week I did do exercises two times. We skipped the morning set. And after sitting there for so many hours, I dont think I really could get her to do the extra set in the time left to us in the day.

I asked Mary if it would make a difference if we did more therapy beyond the 60 minutes. She answered they didnt know because they ahve not studied it but theoretically, if the kid is taking it okay, adding exercises should help. I really meant adding like 5 minutes if its going very well and feels short - like when we are outside. Four sessions with five minutes added are like having an entire session. The most important thing here is not burning Grace out on the exercise.

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Helpful Hints: Exercising

Anyone who has a child in therapy knows that, no matter how good your kid, getting therapy done on a daily basis is a herculean task. Here are some ways we are handling it:

1. We do our practice walking on the sidewalk in front of the house when weather permits. Each walk ends up on the front porch where we do our two other exercises. Then head back to the sidewalk. Time really flies when we do them outside.

2. We do our exercises at approximately the same time everyday.She does a set before she goes to school, her second set an hour after she gets home from school, and her third set after dinner while the other family members clean up.

3. Because the exercises are for 60 minutes a day, we break them up into 3 20-minute sessions. This was at Grace's request. I think it makes a difference when she can control some of what she has to do.

4. If you find you cannot fit in the entire session you planned get in whatever you can. Even if its just ten minutes. That is ten minutes you wont have to find time for later in the day. And it does make a difference.

5. We start each set of our exercises with a snack of some sort. It has to be something you can eat in small portions. I let her pick - even if its "bad" stuff. So it could be cookies I break into fourths. Or chocolate covered raisins. I've used pop because my kids are only allowed pop on "movie nights". Popcorn. Nutella. Just about anythign she is hungry for.

She starts with a small piece when we line up to start. Then when she finishes each set of practice walks (for us up and back in front of the house or up and back in the front room), she gets a piece.

6. My Gracie will complain a lot so I have offered to pay her $1 per day that she doesnt complain. So far she has not been able to make much but it has kept her under a minimal kind of control.
FOLLOWUP NOTE: This is NOT working for us.

7. I find getting her started is the most difficult part of this. But I can safely add on 5 to 10 minutes per session without her even knowing it. Its a good cushion for if you miss a session or two during the week PLUS its a good way to get some extra time in a relatively painless manner.

8. Try using a podometer. They love seeing the number of steps they've taken. I only let her use it for exercises so its "special".

9. We are almost a year into it and this one is a BIGGIE. Gracie really likes Mary but she is afraid of her wrath - tho she has never suffered any wrath. So when she is giving me trouble for anything having to do with exercising or wanting to take off her brace or ..., I 1. tell her I'm going to email Mary about it and tell her, and 2. escalate it by actually calling off whatever we are doing and going to the PC and pulling up yahoo. I've never had to bring it beyond #2 - it works better than anything else I have come up with for the times she gets difficult.

Practice Walk Updated

Mary called and the way to fix this is to walk behind Grace with my hands on her hips and gently move the left hip forward as she walks. We tried it out this morning and it works like a charm!

Trouble with exercises

Grace cannot seem to get the walking exercises with the left hip leading. She is doing all kinds of gyrations. I'm not even sure what she should be doing. I thought I knew and I think when I see it I know (she does do this once in a while). So I put her on regular walking and will wait for Mary to return my call in.

Fourth Week of Casting

Gracie continued to improve in her MEASUREMENTS. We were given three new exercises to replace the ones we were doing. Now she has to do her walk with her left hip leading, balance on her left foot and lift her right to touch my leg three times, and balance on her left foot and move her body back and forth three times.

We were out by 10:45 so moving faster nowadays.

Gracie getting casted by Mary, Barb and Issac:

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