The Shoe Never Lies

Was cleaning out the hall closet and found Matthew's running shoes from last year.  What an eye opener.

Do you see it?  The shoes NEVER lie.  On the left are Matthew's shoes from this year, on the right, from last year.  Do you see the wear marks on that green left shoe?  That was how much he was walking on the side of his foot.

 Here is another view.

For the first time in years and years, Matthew's foot finally seems to be stabilizing.  Finally, we have progress without the steps back.  The end of June marks one full year without a cast and no cast in the immediate future.  That little foot is getting stronger, starting to hold correction.  That little boy (not so little anymore) is working hard to walk straight, to keep his heel down, to try and walk heel toe.

 Funny how an old shoe can bring such joy.

He's Got Rider Pride

We are back from St. Louis. These 36 hour visits are tough on us both.

So some answers. First, yes. He is again in a cast. This time, green and black (there is no white) for his favorite CFL team, the Saskatchewan Roughriders. As you can see, he is a very proud Rider fan.

It is a full leg cast. The last time we did a half leg cast and honestly, everyone involved from myself to Dr Dobbs to Steve who we saw today, feels it was of no benefit. Sadly, it will be the last half leg cast.

Now for the answers.

The callous that has been developing on his heel is purely skin. YAY!!! Did you hear me scream YAY at about 8 am yesterday? It was that much of a relief.
This is what the callous looks like. You can see by the shape why I thought that it could be bone being laid down.



And his leg length discrepancy seems to be holding steady for two years now. Again, another big YAY!!!

We had to wait a long time to see Dr. Dobbs. The man has become increasingly busy. We don't mind waiting, honestly. We travel a long way to see him, and he knows what he speaks of and he knows how to deal with this. We waited for about 4 hours for him. And this time we did NOT leave the room! Last time, we made the mistake of going to the bathroom and getting a coffee and missed him! Had to wait again!

So this time, we waited. And when he did get to us, he apologized, and Kristina apologized and everyone else apologized. What a breath of fresh air. They didn't need to apologize. We know how busy he is. We know how fortunate we are to be able to see him. We know how amazing that whole team is. And how humble they are. What a wonderful group to work with. And how wonderful for them to recognize us in our wait. So many times you see a doctor and you feel like a number. NEVER with Dr. Dobbs and his team.

And the update.

His foot is tight, but that is just what is going to happen when he grows. And if you remember, he just grew out of all his shoes in March. So we are definitely dealing with yet another growth spurt.

Dr. Dobbs is pleased with Matthew's lateral motion. If you didn't see it before, in April we saw this which I was thrilled with. And it has gotten even better. Will have to video tape when the cast is off. Amazing when a year ago it was barely a flicker.

He said with this getting stronger, that one day it would take over and work with us, keeping his foot in place.

Wow. It is like seeing that light at the end of the tunnel, no matter how small or dull. There it is. Finally.

I asked about physio. Dr. Dobbs wants him back at weekly physio. We had dropped it to every two weeks. Will step it up again. Dr. Dobbs also said, "If I remember correctly, his p/t willing to tape?" Yes. (In fact Steve had said that he would tape rather then cast so I could go to my reunion) Dr. Dobbs would like Matthew's foot to be taped after every physio appointment and leave it on for a few days. Just to get that extra stretch. Will do.

And to keep up with the E-stim. Yes, most definitely. Dr. Dobbs asked what Matthew had it turned on to at home. I said '3', almost cringing, expecting him to say that wasn't enough. But never from him. He said that was fine. In fact, I told Dr. Dobbs that Steve was talking about using a stronger E-stim machine while at physio. I said that Steve told me that he pushes on Matthew like he does an adult and that Matthew never complains. He smiled and nodded. Like he knows, because I think he just does know.

And just before he was casted, I shared with the team a poem Matthew had written in school. They wrote many poems, subjects always up to them.

This was the frame work for Matthew's Cinquain.

Cinquain Pattern #2

Line1: A noun

Line2: Two adjectives

Line 3: Three -ing words

Line 4: A phrase

Line 5: Another word for the noun.

And this was his poem.

St. Louis
helpful, kind
helping, casting, caring
helping people when they have a broken leg
casting

All of the people seemed touched. But Dr. Dobbs especially. I said that St, Louis and casting was a big part of his life. Dr. Dobbs said 'Definitely.'

Yes. Definitely. That city, those casts, and more importantly, those people involved have become a huge part of that little 8 year old's life. Slowly, slowly, bit by bit (sorry, can't help but quote the Digging-ist Dog) we are assembling an amazing team for Matthew.

One day, we will emerge from this tunnel. I know it now. I can see the light.

"I Am Not Going"

We leave for St. Louis in 11 days. I've been trying to prep Matthew for the possibility of a cast. In the past, he has been very easy going about this.

I don't believe in hiding things from kids. I told him that if he gets a cast, he will miss the last week of baseball, and that he will be in a cast for the birthday party of a friend. (the birthday party is at a gym where they will be playing hockey and soccer)

Matthew hid his face and wept quietly.

"then I am not going to St. Louis"

This time, maybe it is too much.
This time, maybe he is missing too many things.
This time, he is very sad.

Makes me a little sad too. I sometimes forget how much he has been through. What a brave face he puts on for the world. That he is only 7 yrs old.

I have 11 days to get him used to the idea.

And maybe, just maybe, this time...there will be no cast. It is my secret hope that I can't share with him.

Four Weeks Today

Matthew's next appointment with Dr Dobbs in St Louis is four weeks today, Feb 8.

I have mixed emotions. First, I am hopeful that this time, finally, he will not need a cast. I am hoping that the lift on his shoe is doing it's job. That it is finally holding the correction. And, then, I worry that I am placing so much hope on a half inch piece of rubber. Seems that since seeing Dr Dobbs in October I have been holding his words too close. He said that at some point, Matthew will no longer need casts. Gosh, I know for the normal person, that statement seems silly. Of course at some point there will be no more casts. But after 7 years of this, I truly am no longer able to see the forest for the trees.

I am trying to decide if I should bring Matthew's crutches (yes, he owns his own crutches. Getting crutches for a young child is near impossible). Normally, I would think, yeah, grab them. Can't hurt. But now, with the new travel restrictions I worry that traveling with hollow metal tubes that are crutches will only slow us down and cause havoc. But, to have them if he is casted makes our lives so much easier as we change planes in airports. (they are supposed to keep all weight off of the cast for at least 24 hours to let the plaster cure)

And then there is the whole issue of travel restrictions. How can I travel from 7 am til 5 pm with a 7 yr old with only a small purse to carry things on? And, I have not owned a purse in over 20 years. Where do I even buy one? Days like this I want the chance to line up and kick Umar Farouk Abdulmutallab in the butt for making airline travel that much more difficult.

St. Louis, The Good, The Bad, And The Ugly

We are back from St. Louis with an interesting update.

First of all, the good.

We were sitting in the waiting room at the hospital. I was reading my book when Matthew said "Mommy! I see my friend D!" I told him, no that I didn't think he would see his buddy there. (He made a friend in St. Louis his first trip there in May and saw him a lot) I looked up and sure enough, there he was! Talk about fate! We had all flown in for an appointment that day without knowing the other was there. The boys were thrilled to be able to see one another again and to play at Haven House later.

The other good... Dr. Dobbs was happy with Matthew's foot. He said it still looked good.

The Bad

Matthew's heel cord has been getting tight despite all the p/t. Dr. Dobbs thought it would be beneficial for him to spend a week in a cast. Get a good long stretch. Matthew was really upset about this. He really didn't want a cast again. He had some tears when we were left alone. He cried because he would miss swimming. He cried because he didn't want to fly again with a cast. He cried because he wouldn't be able to do the monkey bars. He cried because he didn't want to have to go to school in a cast. But, by the time we made it to the cast room, he put on his brave face and sucked it up better then any adult could. Have I ever mentioned how proud I am of him? :)

The Ugly

Dr. Dobbs intern came in first and had Matthew walk. He immediately felt Matthew's hips. It was like a huge light bulb going off... leg length discrepancy. Sure enough. Matthew's left leg (clubfoot leg) is 1/2 inch shorter then his other leg. The X-rays they took when they removed his cast in May show it clear as day.

Why is this the ugly? Maybe because I am so mad that his surgeon here of 6 years never once measured for it. Never once mentioned the possibility. Never once said that clubfoot with neurological disorders often have leg length discrepancies. SIX years... not once. And Dr. Dobbs found it in Matthew's first post-cast appointment.

What is really ugly is that perhaps, if this had been caught earlier, he could have been wearing a lift in his shoe for a long time and maybe, just maybe it would have slowed his regressions or (maybe this is wishful thinking) prevented some of them.

I was able to pick Dr. Dobbs and Kristina (his nurse)'s brains while they casted him. Dr. Dobbs said that yes, it is possible that with the lift, it could reduce the regression. That his running/walking with his foot turned in could be due to the leg length difference. He also said that one day, Matthew WILL be done with casts. It will happen, he just can't tell me when.

Those were the most beautiful words I have heard in a long time. I told him I was going to hold him to that.

I have to say, Dr. Dobbs and Kristina are such a wonderful team to work with. We have been so lucky to have found them.

So Matthew got his cast (red with a green stripe - his choice) and it is straighter then any of his previous casts. It has made it difficult to move and impossible to reach his foot, but I hope, a better stretch.

Then, off to orthotics to get his brace fixed and to get a lift on the shoe that we had with us. The entire black portion on the bottom is the lift that was glued to the shoe. I have an appointment to take his other shoes in here to have lifts put on them.



Then, back to Haven House to play with his buddy.


What is under the cups? Why praying mantis's of course!


We are now back home and Matthew has not complained once about his cast, save for this morning when he said he had to show me something. I took a peak at his big toe. It was covered in dried blood. The fiberglass was a bit too long and digging into his toe. I got out the scissors and cut it back. He said thank you and ran off to play before school.

Man... that kid is one tough cookie. Makes my heart swell with pride.

Cast change day

Matthew had his cast change this morning. Nothing stellar to report. His talus is still noticeable and Dr Dobbs admitted that it may always be prominant. I also asked if he was most likely going to have the tenotomy seeing his foot was not and still is not in nuetral. He said yes.

His foot is turning out nicely though, just needs to move upwards now.

Matthew decided earlier this week he was going to have a pink cast. When we got to the hospital he decided orange. They only had 4 inch and not a lot so they added a white stripe to it. He LOVES it.

His buddy is going to be at Haven HOuse later today so we are going to head that way for a visit this afternoon.

Inspiration

Have you seen the cover of the latest Good Housekeeping magazine?



Absolutely and whole heartedly agree with Michael J. Fox's quote.

"Happiness is a decision."

Nuff said.

On a side note, my poor Matthew. He is in a full left leg cast, bandaged right hand from his minor surgery, and now, because of the massive doses of antibiotics (I think he is getting massive doses so we can finish before we leave on Sunday seeing the stuff needs to be refrigerated) he now has diarrhea. And we had just mastered balancing on the toilet with that cast. Poor kid, hasn't even complained.

What can you do in a full leg cast?

This is what I want the boys to do



This is what they decided to do while I was busy with laundry.




So the answer to What can you do in a full leg cast?

Anything you can think of.