Boots

Gracie wearing her AFOs:

She wanted a photo of the blue dogs on the backs.

We went shopping for winter boots today. I tried Sears which has the EasyOpen Lands End boots. No luck. Had to go up to a size 6 before I could get the AFO past the back of the boot.

So I ordered various boots in various sizes from LL Bean. I ordered the Storm Chaser Boots which are back ordered until next week. They are not great being low cut but they'll work better than regular shoes. I also ordered the WDL Boots - both the Quick Grip and the Bungee. I think the Bungee might work out as they are laced. The Quick Grip seemed like it opens wide. Well, we'll see. I even paid extra to get them here in two business days as Gracie is all bent out of shape about the prospect of not having boots. Worse case, the Storm Chasers should work. She is wearing a 3 shoe so I ordered 3s and 4s. Will return the ones that dont work out.

Next Phase Begins

Onward and upward! Today Gracie got her casts off (hopefully forever!) and her new AFOs. They videotaped her walk for comparison purposes. Mary wasnt there so Brigid took care of us. Because she has the range, she doesnt require an ankle strap to keep her in. A big difference -> the brace stays in the shoe and she puts them on as a unit. Her feet just slide in - no more wrestling the brace into the shoe. She also rec'd a night brace - just for the left side - which she uses with the knee immobilizer.

We still do the 1 hour daily of practice walking - Brigid didnt like the way she was moving her hip forward so we were told to stop that. And we still do the four exercises we were already doing. We had two execises added. Each of these are to be done on both sides. She is supposed to raise herself on her toes on one foot while the other leg is held up off the ground. She is to do this 100 times over the day but she cant even do ten on her good leg right now so its highly unlikely we'll reach that this week. Quality is more important than quantity. The other exercise is to sit down and lift her foot up - exercising the anterior tib? - in a way she'll need when she walks without a brace. This is going to be her nemesis - she is particularly weak there. But we need it to get out of the braces ultimately.

Two views of the new AFOs:

CLICK HERE TO BEGIN AT WEEK 1

Almost there!

One day to go! We are psyched!

Today's Lecture: Daily Therapy

DAILY THERAPY...
is the single most important contribution you will make to your child's future. No matter what your child's age, it is my very strong opinion that you HAVE TO participate in the exercises in person and be 100% engaged. Outside of the emotional distress of dealing with a child's disabilities, its the most difficult part, again in my opinion. Its exceedingly boring, your child will most often NOT want to do it, you will not want to do it (tho you have to) and it goes on for years. It takes up time and you are the only person to enforce it - except for the days you have regular therapy where you would either have to lie about doing it or stand before the therapist and admit you didnt find it a priority.

The attitude you exhibit to your child will help to determine how much of a struggle your therapy sessions will be. I'm a strong advocate of the no-nonsense, this-is-what-we-do-daily approach. I believe in bribes and punishments. I also believe in exhibiting empathy, and joking and trying to make it fun in the case of an older child.

When Gracie was first diagnosed and started seeing therapists, I was given a set of stretching exercises and told to do these twice a day. Instead, we did them five times a day. She cried from the minute we started them until we finished them, and this was extremely hard. I had to harden my heart to the crying (wish we had IPODs then!) and I just did it.

As she got older, she would fight me more about starting or do a really bad job or get silly as a way to avoid the work. I found setting a fixed time to do therapy was helpful. And I was very spontaneous (something that comes hard to me) with how I would deal with her in real time. I used music that she enjoyed but could only listen to while we were doing therapy. Treats are with us always. Note: They must be small tho - like M&Ms, or a very small amount of Nutella or a drink of pop. Things like that.

When she would become rowdy, I'd be swift in letting her know the punishment if she didnt stop and then I always would follow through. One spring she was giving me major difficulties so I threatened to eat the head off her chocolate easter bunny. She stopped immediately so I didnt have to (how cruel if I had to!) Another time I threatened to throw her doll out into the yard. She pushed and "Francie" had to watch the rest of therapy from outside on her face. Now I will let her watch 20 minutes of a movie (we do not have television) or I'll read to her or play a game after she is done if she does a good job. Not always - just when she is reticent about doing it. Also, I try to tease her into better moods on those days when she isnt cooperating or is complaining about how she has to exercise.

Remember, you are the adult. You are the one in charge. And you are the one who will have to answer for your failure to make daily therapy your priority. I wanted to do what is best for my girl and so daily therapy is just part of our life. I want to be able to look myself in the mirror and know I did not do just the best I could do but the best ANYONE could do. And, more importantly, I want to be able to look her in the eyes when she is an adult and say in all honesty that I did everything possible to help her overcome the effects of her stroke. Being a parent is my top priority.

Lecture for today is over!

Two Days to Go!

We are both excitedly looking forward to Wednesday when she'll get these casts off once and for all! I bought three pairs of shoes in various sizes. Two are Vans and one is a Sketcher. I could not find knee socks so sent out my SUPER SHOPPER (aka my mom) She could not find cotton ones but did find acrylic ones so we are okay for now.

We missed a lot of exercise this week due to Xmas. Friday Gracie had a bout of food poisoning so she did not exercise Friday or Saturday. And, of course, with Christmas on Sunday she didnt get any sessions in yesterday. However, we'll be doing the usual today.

*For those who are local to Chicago, I bought them at Golden Shoe on 122nd and Harlem. Very good salesmen but stay away from the one woman who works there.

Today's Lecture: Attending Therapy Sessions

ATTENDING THERAPY SESSIONS ...
is a MUST for a parent. While its much more pleasant to sit in the waiting room and read a magazine or book, its essential to actually BE IN THE ROOM to fully extract value from therapuetic sessions both at home and at the therapist's. And this is true for your child's therapy no matter what your child's age.

Actually seeing the therapist doing the exercises and stretching helps you to understand exactly what parts of your child's body are involved and the purposes of this work. Over time it helps you to develop an "eye" for how your child should be using her body and the compensations she develops that can hinder progress. By this point in time, I can see ways Gracie is trying to make a workout easier and I can ask the therapist specific questions about the viability of doing it in such a way. Maybe sometimes it doesnt matter. Lots of times it really does.

Being in with the therapist gives you an opportunity to have an expert advising you in real time. When she assigns your homework, you can run through it with her before you leave to be on your own. By "run through it" I mean you can do it in front of her and have her correct you where necessary. Otherwise you can find yourself doing something totally useless for one week and wasting that precious time.

One has to be careful not to take it as an opportunity to chatter away with the only other adult you'll interact with until suppertime. You have to be in there as a student and as the home therapist of your child. Its fine to talk about non-therapy (I find that many therapists end up as "ears" for their patients' parents but they also have lives they like to talk about.) But never take your eyes from the prize. Having a personal relationship with your child's therapist is very handy but not required.

That said, some therapists will not want you in there. You MUST ASK THEM to explain why. We've had two therapists who claimed when I was in there Gracie would misbehave. However, that was more a function of a phase she was in her attitude towards doing therapy than her being with me. For if I could get her to do 1.5 to 3 hours of therapy a day with minor discipline problems, who better to get her moving? Certainly not a therapist who sees her once a week for one hour - fifteen minutes of which was reserved for her "paperwork".

I have ended up with true world-class therapists and none of these have had a problem with my attending the sessions. If your therapist does not want you in there, find out why. If its something you are doing, then change yourself so you are welcome in there. If she just doesnt want you in there or its a reason you do not agree with, CHANGE YOUR THERAPIST.

Lecture for today is over!

Shoes and Socks

Tomorrow I am going to the shoe store to find her shoes. We need to buy Vans tho Fila, TM2000, Sketchers, and Reebok were also suggested brands. I dont remember her previous size so not sure what is going to fit her. The shoes have to be two sizes bigger than normal. (I HATE that part.) And, I'm not sure where to get cotton knee highs. I need those too.

It says on the paper they gave me that she will wear the braces for a minimum of one year. Then, after one year, they will start to wean her from them. So I'm not sure what is goign on in that part of this. But I dont really have to care about it right now. She is allowed to take them off to swim so we are covered on the important stuff in summer.

Meanwhile, we continue exercising and practice walking as directed. NO WAY are we going to be the ones who lose all this work because we didnt do our homework.

Trouble with Cast

Twice, after Grace was casted and waiting to be leveled out for her boot, she had pain over the front of her ankle. Both times the cast had bent in at that point - once someone's finger had been a mold for the fiberglass there. Instead of removing the cast and starting over, they cut a horizontal line across the cast at that point. This, however, wasnt enough. So an intersecting vertical line was cut. Thus they avoided having to recast her.

Snow and Cast Shoes

My kids love to play in the snow. So it was not without trepidation that I watched the first 6" fall here in the Chicago area. I knew she'd want to go out.

Issac suggested plastic bags on the casts. Great idea!

I took a plastic grocery bag for each cast. Placed her foot in it like I was bagging her foot. Pull it up and pull the excess bag tight around the cast. I use the handles and excess bag to make a small knot. Holes in the bag do not matter too much. I just make sure the hole is not over the open part of her cast.

Then I pull an adult heavy sock over the bag - these go up over the top of her cast. You can even forego the tying of the bag and just use the sock to secure it - just make sure the bag is in good position when you pull the sock over it.



Thats it. I put the cast boot back on and she is read to go outside.

She wears this all day - it doesnt seem to bother her. You might want to take it off if the child has been in snow for an extended period of time. They do get damp.

Its important to note that the cast boots have very little traction.

Plan Updates

So now we are poised to begin the second half of the program. Gracie is in her two-week cast and on Dec 28th will get her new AFOs. These are not hinged and will be for both feet - though she is affected only on her left side. Just like the casting, the idea is to equalize them to prevent her shifting back to the right side.

First she'll get checked on Jan 4. Then Jan 25th. Then Feb 22nd. Then we go to every three months. In the meantime, we will be doing PT with Mary once a month for 30 minutes. Grace doesnt need much but I'd like to touch base - it keeps us more responsible and I want her to start moving out of the AFOs as soon as possible. I'd hate to have her be ready early in the 3 month window but have her not start until the next visit.

Mary thought it would be a very long time before we start moving Gracie out of her AFOs - it all depends on how quickly her gait improves and Mary thinks the motor plan is very much engrained (this is how I understand it) That it will be a year from now before we even talk aboutit. But Brigid told me last week that she thinks she'll start in summer. Which I guess is later than most kids but a great improvement over waiting a year to discuss it.

In the meantime we'll have to continue the walking exercises and strength exercises. New strength ones will be added plus one involving a movement difficult for her. Will find out details to post closer to the time.

Going to Kineseotape

I contacted Trish Martin who teaches the class on taping with Audrey. She very kindly agreed to tape Gracie in February when she comes in for the class they give at RIC. Gracie will have been in her braces 1.5 months by then.

MADE IT!!!!

She is in her two week casts. We go back on Dec 28 to get her AFOs. And then we start the next phase of the program. But for now, we are THRILLED she has hit her numbers. And we continue with the same exercises and practice walking.

Click here to go to next week.

Tomorrow AND Sledding

Well here is hoping tomorrow finds Gracie at the 15 degree mark on her R1 knee extended.

Gracie sledding - well, going back up the hill. Her sister is carrying the sleds back to help out.


The boots are slippery and at this point I catch up and pull her up the hill on my sled. I wrapped her feet in plastic grocery bags, put heavy socks over them and warned everyone that this could potentially be a short time on the hill since the casts conduct cold pretty quickly - and I can only pull her back up the hill so many times. They did get damp but dried out relatively fast. And we all had a great time - we were out there around 55 minutes. Not much shorter than usual.

Gracie Problem Going Back To Class

Grace is having a huge problem with going back to school after the casting. She started this around 3 weeks ago. She cries and hangs on me in the room at Childrens harrassing me constantly. She wants to go home and stay home. She doesnt like when the kids turn around and look at her when she comes in. She doesnt know where she is supposed to go. Etc etc etc.
I hold strong - mostly because I have to get out to class at Waubonsee by 12:45 or I get points docked off my grade - and she goes. But its very wearing after a while to listen to her.

AAAARRRRGGGHHH! Week 13 rears its ugly head

Another week! Her knee extended r2 changed but not the r1. So we are at 15/20 for everything except left knee extended. And at 10/20 for that. I was hoping against hope but to no avail. I had wanted it to be off by Xmas. Well, Mary seems pretty sure it will be off by 2 weeks the latest and into the 2 week cast. Which means either its off the Monday after Xmas or the Monday after New Years.

Grace has been giving lots of trouble with casting since she hit neutral. Forgot to mention that. She is so afraid of being hurt she tightens up and gets hurt. Sometimes Mary cant even get her to what she was when she started until she settles down. I have never seen her this way. And she says she cannot stop being afraid. As soon as the cast is done she stops so it does not hurt her to be at that point. Good only one or two castings left. Poor Grace!

Her girth has changed to 21.5 cm which is very nice. And Mary is VERY happy with her walk - seems she is using a penduluum movement on the left side which is VERY good. Hooray!

Same exercises except instead of doing the hip out and bring around the back, she is to bring the hip back diagonally.

I did find out that her shoe size with the AFO is going to be 1.5 to 2 sizes bigger. UGH! All her other AFOs were to the same size as her right foot. So that is not very pleasant. But it will be better than the casts. Guess it has to do with having an extended foot bed? I was hoping for better but will take whatever if we eventually can cut out the AFO all together.

It was BITTER cold at Childrens this morning:


CLICK HERE TO GO TO WEEK 14

Oh no!

Just looked at the numbers and found there was one week where her knee extended numbers did not change at all. Eeeek. Paranoia strikes deep! But you know what they say, just because you're paranoid, it doesnt mean they arent out to get you.

So worse case would be 5 weeks.