Week 21: Refining

Today we are due in to children's. Its 5:30 a.m. as I write this - we will be out of here in 30 mins. Poor girls! I want to find out about putting a weight on her leg and about using the personal trampoline for strengthening.
The main reason we are going tho (since we went last week) is to pick up her new nite brace and fit it. Ugh. Lots of driving because of a stupid dog.

She continues to complain at nite about the immobilizer. Will ask about that too.

UPDATE:

Mary is THRILLED with her walking. For a while there, with the braces on, it was BEAUTIFUL. Poetry in motion. SO this is excellent. Without braces looked very good too. Her max measure on her calfs are only .5cm difference. That is very good too.

So all in all, very good news today. Got her new night brace.

Changes to exercises:
Do ALL the exercises, with the exception of the practice walking, without shoes or brace.

Use of trampoline and leg weights (separately of course :^) )
Do not use them now - good I checked ahead of time - as she is not yet strong enough and will set into her pattern to accomplish these.

See them in a month. HOORAY!

BP we stopped at to get gas at 6 a.m. this morning. Amazing how its so busy at that time of the morning:


CLICK HERE FOR Week 22

Weight

I still have to update Week 20 but am going to do that over the weekend. I sent email to Mary and Brigid asking them if putting a small ring weight on Gracie would help with the tip toes exercise. Or would it interfere in some way - compensation is a big factor here. Will she do something funky to handle the extra weight? Or ??? There is so much I dont know.

Week 20 Begins: Very GOOD Measurements

Quickly... girth on left calf went up. Girth on right calf went down - excellent! Leftie is taking more of its load! Walking great according to Mary. Her cortical control (I learned that is what the -2 CC is) is not changing and thats the number we want to go up. Accordng to Brigid, it takes months for this to happen and its a direct result of exercising so we'll eventually see it move. They liked the toe curling exercises and the results.

Have to have her go higher on her tip-toe exercises. Everything else looking good.

Will update measurements excel file later.

My two girls waiting at Childrens:


CLICK HERE FOR Week 21

Not much new

Looking forward to touching base with Childrens staff on Monday.

Dog

chewed up the foot pad of the nite brace but it still seems to work okay. Will bring it on Monday when we go in for the checkup.

Meditating:


Note: Brace is off right foot because was using left brace as night brace until I returned home and was able to check it out.

That bent arm drives me crazy!

Temporary Problems

with her foot after taking off the nite brace. Had to call in and get an appt but then she was fine when it was time to leave to go to school. So cancelled it and didnt have to go!

Grace's Toe Curling

Not curling:


Curling:


I think its good but I know I'm doing something to facilitate it when I'm holding her. Notice how her right foot in the second photo is "assisting".

Week 19 Begins Uneventfully

Toe curling is looking good - particularly if I support the bottom of her foot. I dont know why. I'll find out next Monday.

Otherwise she is doing great. Complains somewhat but does her work. It takes us roughly 30 minutes to do everything inc the 20 min practice walk, the exercises she does with her shoes on and the set she does with them off.

So we are putting in a total of 90 minutes a day on this.

CLICK HERE FOR Week 20

Back to Routine

We are back to our routine. Just an update on strength...

She can now do the 100 reps required if we break them into 3 sets of 10 over her 3 daily exercises. I am working on her curling her toes. I'll be glad to get back in there so I can refine that. I'm sure its helpful but probably not in the way I'm doing it with her.

She has been a major talking machine the last two times we did exercise. I have to keep telling her to turn around and pay attention to what she is doing.

The funny thing about our dog who is now sadly deceased was when I called Gracie to do her exercises this dog would come charging in, barking at Grace and running around her. This was multiplied if Gracie gave me trouble. I dont know why the dog cared. And the dog would also walk around with us in our circular path - usually hitting my hand with a toy and wanting to play as we walked. A few days before she died I demonstrated it to my son (he is 16). All I had to say, real loud, was "Gracie, time for your exercises!" and the dog would jump up and look for her, barking. It was so funny. She will be sadly missed - for that and other goofy things she did.

In Memoriam for our Pixie-Doodle Girl:

Happy Birthday to Grace's Dad

He is 51 today.

Things back to normal for the most part.

No exercise today

Our 18-month old, dobe-mix Pixie died unexpectedly at home last night. Our house is in too much of a mourning state today to do anything.

Problem cleared up

I iced her bump, kept her out of her brace, and skipped exercises yesterday and this morning. She was fine. So no trip down to Childrens. Was able to tell Brigid we werent going to find it necessary to come down. That bump sure is big tho - I'll ask them about it when we go next time.

New Development: Problem with right foot

Grace developed pain in her right foot as shown below around 3:30 pm (when it was time to go home from school). Its not a blister. Just slightly swollen and reddish.

I called Mary who thought Brigid would need to see it. Brigid called and told me to 1. ice it, 2. give her Motrin, and 3. try tomorrow. We are to skip our exercises for today. If she is still sore tomorrow then I am to bring her in to see her at 1:30.

Week 18: No Check-in

We are on our own now until January 23rd. Its pretty nice not having to get her out of bed at 5:40a.m. and get her ready to go downtown. Exercises are moving along.

Simply put, she cannot curl her toes on her left foot. At least, not spontaneously. So I added an exercise of just plain curling her toes to our other braces-off exercises. I sent Mary email asking her if its okay. I'd hate to ruin something else by adding this.

Two interesting facts:
1. When I first tell her to curl her toes, she cant. The farther we get in the set, the more she can curl them.
2. It appears the little toe and the one next to it are making better "curling" progress than the others. I have a very foggy memory of some reason why this is so.

Now we have to add her hand exercises - they have been neglected and it shows. Tho her walk is beautiful with both arms down. No hiking.


CLICK HERE FOR Week 19

Here is a photo of us on New Year's Eve:

FOUND BOOTS!

Woo Hoo!!!! Finally. They are not the world's warmest - I had to take the boot liner out to make it easier for her to get them on - but they do have some lining left and THEY FIT!

I bought them at THe Childrens Place when I went in to pay my credit card bill. I bought theSnow Boots and the Quilted Boots but only the Snow Boots worked. I bought the same size shoes she wears - size 3.

The secret is to look for a boot that is not stiff at the back of the heel. Something flexible.

Let it snow! Let it snow! Let it snow!

Week 17 - Everything looks great

Today we went in for a 1:00 appt. Her walking, in and out of the AFOs, looks terrific! Even her left arm was down. Mary and Brigid (and even Issac) very happy with how she looks - esp given how she looked last week. Her measurements seemed okay as well.

We rec'd new knee immobilizer today. And two changes were made to our exercises. So we are still doing:

1. 1 hour practice walking - tho I need to keep an eye on whether she is bringing that hip up or not

2. 15 times per session of left foot weight bearing, right leg swinging in towards the center of her body, same with right foot weight bearing, lifting right knee up to ceiling while weight bearing on left and bringing the hip back at a 45 degree angle on the left side back from the center of her body

3. Without the brace: tiptoes right side, left side as many times as can effectively do up to 100 times. Sitting down, clench the toes of the right foot and bring foot to left along a horizontal plane. Sitting down, do the same on the left side. On the left side, lift the foot up and down making sure she is using the correct muscle to accomplish the task.

Next session with Mary and Brigid is three weeks from this past Monday. Hooray!

BTW, she is looking so good I've decided not to utilize the kinesiotaping. I dont want to mess things up.

CLICK HERE FOR Week 18 - No Check-in

Lakeside View from Room 4:

Boots - A Saga in Themselves

Well I tried at Sears with the Easy Open Boots from Lands End - no luck. I ordered two likely pairs in two sizes from LL Bean. They arrived today. No luck. I have a pair of boots that are really just shoes from LL Bean coming soon. I'm fairly certain they'll work. I hope she does okay without protection for her legs - just her feet. But they beat regular shoes since they are waterproof and have traction. Its not too bad of an alternative. Those should arrive next week. We'll see how it goes. Keeping my fingers crossed no snow this week and next.

Today's Lecture: Finding Doctors

FINDING DOCTORS ...
is easy - yeah, right! Finding the right doctor is tough. They are the experts. At the beginning, you don't really know much except what a family member or friend might tell you. Maybe your doctor has recommended someone - usually in their building or a friend. Or they "heard good things" about a doctor. And there is always the phone directory <-- that's a joke.

In my experience, the best way to get the BEST doctor is to find one at a university hospital - preferably a teaching hospital - or at a TOP NOTCH rehab institute. These doctors are on the cutting edge of treatments and knowledge. They arent sitting in their little offices in the middle of no-where learning from papers and the occasional seminar. These university doctors are on the front line of care.

One disadvantage to these can be the time it takes to actually get into their offices. It is not unusual to see a wait-list of three and four months. But, remember, time passes whether you are on that list or not. So, get on that list! Call back often to see if you can pick up a cancellation.

Sometimes the location is inconvenient. They can be far from your home or in a dangerous neighborhood. But after the initial months, visits to the doctor are infrequent. And isnt your child worth the work?

Also, you tend to see them "in clinic" which can mean monsterous waits - over two hours in many cases. You can minimize these waits by trying to get the earliest possible appointment when you have the choice. Otherwise, you'll just have to bring enough to do - perhaps plan to eat in the hospital cafeteria.

I've found university and rehab docs to be the least rushed. As long as you arent rambling they are willing to stand there and answer questions. In fact, I've found they really are interested in helping you when your questions are well thought out. (On the other hand, they seem to have very little patience with the predicted prognosis questions - will she walk? will she talk? is she affected cognitively?)Our doctor from Chicago Rehab actually answers questions sent via email within a day. I know they've seen almost everything and any inconvenience associated with them is well worth it.

So, get thyself to a university/teaching hospital!

Lecture for today is over!

Need YOUR Experiences, Ideas and Thoughts

When Gracie was first diagnosed, I felt like a raft at sea. I had no idea where to go for therapists or doctors. There was no one I knew who could share experiences or give advice. I met those people once we were within the system but I needed them months earlier. I floundered about but through a mix of chutzpah, luck and common sense, ended up with a great set of doctors, therapists, and attitude that has proven very effective.

I decided to do this blog when Gracie began the casting program because I would have liked to read of others' experiences in this particular program. As time went on, I decided to add personal opinions on aspects of therapy that I hope will help others. A kind of blog-based mentoring.

But I'm just one data point and one set of experiences. So I address this to the many guests who visit this blog. If you have any helpful hints or experiences that you think are good information to know, please either comment here or email them to me at jeanmdomel@yahoo.com

You never know who you can help.

Happy New Year!

Here are before and after pics of Gracie's left foot.

Before, in Sept:


After, in Dec: