Oh HAPPY Day!

We went to Childrens today for a three-month checkup. It went fantastic! We are to keep to the same exercises but change the brace-wearing schedule. Now Gracie is to wear her altered left shoe (remember, her left side is her affected side) and a regular right shoe for six hours a day, and her altered left shoe and her right side AFO for six hours a day. Having her wear her altered left shoe and right side AFO is called Forced Use with the idea being wearing the AFO on her right side will cause her to use her left more because its easier. Everything looked great. Even her measurements had improved (though her range with her leg straight did not.)

Grace is thrilled as this allows her to go to school without wearing her braces. She has always disliked being different because of them plus now she feels she will look nicer. Then, when she gets home from school, she'll go into Forced Use once her exercises are done.

She is still keeping her left hip back so I am going to make an appt at LaRabida with her former OT, Audrey Yasukawa, to have her kineseo taped. We are going to go there the same day Mary is there so it is done just right. I think this is going to be a great help. I have been kineseo taped just to see how it works and it really does make you more aware of your body without forcing you into position.

Biking

Gracie, being the youngest, always had her bike as a hand-me-down from her older sister. My grandmother (97 and going strong!) read this in some letters Gracie wrote to her and felt for her. So she sent money so Gracie could get a brand new bike!

I took her to the bike shop where her brother works and bought her a beautiful Gary Fisher that should last her for a couple of years.


THANKS, GRAM SMITH!!!

I have her ride it with her sans-braces shoes so she can bend her ankles when she pedals. Otherwise its too difficult, I feel, for her to ride.

RIC Appt

Well, we mailed the brace in and it was returned ten days later in perfect shape.


View from RIC treatment room window

Wednesday we went to the Rehab Institute of Chicago where we met with Gracie's rehab physician, Dr Gaebler (she is WONDERFUL!) and Dr Dias (rather dour that day but not always so.) Anyway, Dr D had her range at neutral so that was excellent in that he just jumps up and does it and Gracie tightens up in anticipation. So since its the same range he had her at in December and she has been mainly wearing her special braceless left shoe with the right shoe being braceless due to the broken brace, then I deem that EXCELLENT!

They anticipate her losing range with her next growth spurt. They didnt realize she had a fairly large growth spurt in fall and did not lose any range. I am figuring if we keep doing our exercises, wearing the nite brace and following instructions from Childrens we will weather it just fine. I plan to keep her in the long term serial casting program because I see results and we are progressing. All I have to do is look at the three botox results (nothing lasting more than six months) to know that what RIC suggests is not always the best long term. That I have to use my head. So I plan to keep with the Childrens program for now and when she finishes growing and if she is still in braces go to surgery. The docs at RIC seemed fine with that.

They also brought up a "Smart" stretching machine which involves some kind of video game playing with your toes (would LOVE to try that) but I need to get Childrens to okay it. And they have a overall body range of motion study that they want Gracie in which I think would be very exciting. I love having her participate in those.

(After our appt, we had a fun time cruising thru the downtown Borders, American Girl and the Hershey Store with lunch at Corner Bakery. Just an overall lovely day.)

We have an appt with Childrens late in July. I am looking forward to that - she is looking pretty good to me. And now with summer here we can keep working and will go in there thoroughly prepared.

In swimming lessons the other day, Gracie, for the first time, got full range with her left arm. The instructor pointed it out to me several times. Not sure what it means but it was very exciting!

Brace DISASTER!!!!

Eeeek!
Gracie was scootering yesterday. We had gone a mile, pulled up to home and she had leaned her scooter against the garage door when...
CRACK!!!!
Her right side brace broke just like that. Snapped in two at the ankle.
Now we have to deal with shoes and no brace and what to do.
Luckily, Mary responded to email this morning and said we can come in today or tomorrow to get measured for a new one.

More GOOD News

We went to Childrens yesterday. Took more than an hour to get there!

All went as great as it could go. And I knew it would! I told Grace not to worry as she looks terrific and they heartily concurred!

Her range remained the same which was a pleasant affirmation since she had grown quite a bit in height. Its an affirmation because I knew it from working with her everyday. Her calf growth was very good too. So all measurements were excellent.

She did her walks - with braces, without braces, and with the shoe without a brace. Gracie looked marvelous in all of them.

So we've had some changes in exercises. Now we can skip the "slides" and replace them with walking bent over with knees straight and shuffling. Luckily we begin at only 3 minutes of them for each session - morning and evening. So we gained 7 minutes to put into her standing stretch. Hooray! But we do have to work on building that up.

Also, they confirmed what I had observed recently - that Gracie is lifting her toes on her left foot when she is walking. So thats resulted in the dropping of the exercise where she lifts her foot up 100 times and been replaced with lying on the ground, knees bent and tapping her foot 100 times.

Finally, they changed the 100 times calf raises to 100 times calf raises doing both legs at the same time but slowly lowering the left foot to the ground.

Lots of changes. Lots of positive results.

Hooray for Grace and all the hard work we put in twice daily! We go back in June.


BTW, we got our winter boots at The Childrens Store

On to NEXT Phase

We went in yesterday. She did lose range - which we both expected because I had a tibial stress fracture for the past four weeks that seriously impaired our ability to do the strength parts of the exercises and interfered with our exercise schedule.

But, after some further analysis by Mary, the conclusion was drawn that Gracie's problems mainly stem from the way she holds her hips. And, that she actually had not lost functional range. In fact, after doing some stuff with her hips and remeasuring her she actually gained 5 degrees.

So now we have been moved to the next stage. We have a new exercise - she is to stand facing away from me with her right leg draped over my thigh causing her hips to shift up by fifteen degrees and she is to rock back and forth. (Next time we will add rocking from the left to right but she couldnt do it yesterday.) We will do this as often as we can for fifteen minutes per session.

They added a "forced use" component. She will be taking off her left brace for six hours of the day and will be wearing a shoe that actually fits her foot with a lift in it. They are trying to break down that right side dominance a little.

We are to come back a month after we get the shoes fixed (they are to be mailed in so we will probably get them this Friday after Gracie's piano lessons) to see how its going. Since I am now off my crutches I am sure we will do great.

*** CONGRATS TO BRIGID AND TOM (i hope thats his name - lol) ***

Little more than two years

Less than two weeks to go before we return to Childrens. There is the possiblity that if Gracie hasnt lost range we'll be able to start moving out of the AFOs. If not, they were talking about doing so in January.

She looks good to me in terms of her walking and exercises. I dont know about the range though. She has worn her night brace every night - no exceptions. I know that makes a huge difference to her range.

So we are keeping our fingers crossed as we head towards our appt time. We've been in the program a little over two years now.