Look What I Have!

Stopped in at Steve's office yesterday and am currently renting this machine. Most likely we will buy it next week, Matthew seems to be quite content to use it daily.

This was last night. Computer games are a great distraction.

Matthew even consented to using it this morning(we are off camping today after school and I am not bringing the machine). I think having him read Dr. Dobbs' email helped. This is what Dr. Dobbs sent.

I know Kristina has already answered regarding the brace questions.


I just wanted to say Matthew’s foot looks great and I’m pleased that he is getting the E-stim as think he has the potential to benefit from this modality.


Do keep in touch.

Seemed to be very meaningful to Matthew. Seems that Matthew is understanding that what we are doing could stimulate those muscles and allow for more motion then ever before.

Maybe he is as hopeful as we are.

Complete 180

Yesterday I was frustrated and confused. So I sent a message last night to Dr. Dobbs and his nurse coordinator Kristina Porter. Told them that Matthew's AFO was bothering him and where. Told them that he has been doing E-stim and that Steve felt Matthew was gaining some slight movement in his toes.

I had a response less then 12 hours later. I can not express how thankful I am to have found this amazing team. They work so hard for all their patients at all times.

They discussed things and gave me some new ideas to take to Matthew's orthotist to work with this AFO.

And the best part, Dr. Dobbs feels that daily E-stim could help and could we get a hold of some equipment for home? Maybe it is the sun shining this morning. Maybe it is the beautiful deep blue fall sky this morning. But I got goose bumps reading that. Maybe, just maybe this is another sign of things moving forward.

For so long we have been stuck in the same treatment for Matthew. Finally, we are off the loop track and walking down the road. It is going to be a long road, but today, it is a beautiful view.

My Normal Seems... Well, Normal

Tuesday was Matthew's physio day. He was actually looking forward to it. He has really bonded with Steve. And, well really, how can he not? Here is a young, cool guy who thinks Matthew is the best thing since sliced bread. Seriously. There is some sort of magic there.

And my husband booked a p/t appointment for himself at the same time. Perfect. I dropped Matthew off at 4:15 and headed to the reception desk with Ryan to head to home to make dinner.

Stopped at reception to make Matthew's appointment for next week. The owner of the physio shop stopped by to say hello and ask me, "So, what did you do to your son? Soccer accident?"

I replied with "No. He was born with a neuromuscular clubfoot due to nerve damage. We are trying to keep his heel cord loose and his talus in position to avoid more surgery."

He looked, well, speechless. After a few seconds, he said "Surgeries?"

I gave a brief outline... tenotomy, medial release, tendon transfer, calcanial ostiotomy... that we were really trying to avoid another tenotomy or worse. Or at least post pone as long as possible.

He stepped away from me. Looked at Matthew, and Steve. Walked back to me. Said, "Wow." Deep breath. "Steve is great." And left.

Some days I forget that my normal, Matthew's normal is not that normal. But I think that as long as I can keep him feeling normal through this process, the better off he will be.

Two insights from p/t this week.

1. Giving Matthew Motrin helps immensely. I forgot last week but remembered this week. Steve noticed a huge difference. Will try not to forget from now on.

2. People in the office for treatment while Matthew is in will receive less care. Craig said he will never book another appointment at the same time as Matthew. Steve was just to focused on Matthew.

Hoping that remains a good thing.

Soemthing Magical

I know. I posted that Matthew's appointment with his old p/t (L) did not go well last week. I was concerned that his new p/t (S) was not getting the right stretching, not getting the time in (he does 30 min as opposed to 60 min) that he has never worked with kids and may not have the experience needed. I was worried that we were going to have to try and fit in trips across town over the dinner hour back to L for physio.

Matthew saw S again yesterday. I told him L's thoughts on Matthew's foot. That is didn't seem any looser then when she saw him last (pre-cast) but that she thought his talus was moving better. I showed him the new stretches (mobilizing the talus) she wanted me to do. S said I was doing them right, good, they are harder then ones I have been doing.

After stretching for about 15 min, S said he thought that Matthew's foot wasn't too bad. He compared it to someone with a bad ankle injury. He felt that he wasn't missing that much dorsiflexion. He believes that what we are doing will keep him away from surgery.

He opened up about what he went through. He said was born with severe in-toeing. Said that the doctors told his parents that they would cut the bones of his lower legs, turn the legs out, then reattach them. He was old enough to understand what was said and was terrified. His parents said no way. They sought other ways to fix the problem. They found physio and they found sport. In particular, skiing and skating. Forces the feet to be parallel. He asked if Matthew had ski boots.

I looked out the window. From there, you can see Canada Olympic Park. The night lights had just come on and the snow was sparkling. It is open and they have started lessons. I told him that for the past few years, Matthew's foot has either been operated on, casted or so messed up he has not had the opportunity to try skiing. But this year, we had been talking about it.

S smiled and said "get him in."

There is something about S that just feels right. Maybe it is hope. Maybe it is his positive attitude. Maybe it is the special relationship that is forming. He is young and Matthew thinks he is cool. And he really cares about Matthew. You can just see it. I think he sees himself in Matthew. Perhaps this was the reason he became a p/t in the first place. To help one person like he was helped. And here is Matthew. With a foot that the doctors here want to operate on, and his expertise and experience to stop it.

Some days, it just feels magical. I have no other words to explain it.

This morning, reading the paper, I saw an article about getting the family out in the winter. Talking about skiing. The article talked about how to save money and still ski with your family. Seems that Sunshine Village has some special passes. A child born in 2002 (Matthew) can get a season's pass for $25 (one day lift pass is $27) and a child 5 yrs and under (Ryan) can get a season's pass for $25.

I called Canada Olympic Park. I can have both boys in lessons as soon as this Saturday.

Do you feel the magic?

Feels Like Christmas

The view out our window is enough to make you think Christmas is just around the corner.


And we got to open this cheery looking package today.


Not sure who I felt more sorry for. The poor doctor attempting to remove a Dobbs cast or poor Matthew who had to endure it. Normally, cast removal takes five minutes tops. This poor guy was stumped and mystified and it took him 40 minutes. Normally, the cast comes off in two pieces. This poor guy butchered the cast (better then butchering the child) and we only saved 2 of the bigger pieces.


Matthew is doing well and walking on it already, although it is tender and he tires quickly. Shouldn't take long before the crutches go back into storage.


Also stopped in and saw Matthew's orthotist for a lift on his indoor school shoes. Found out that only 3/4 inches and more are covered here. How silly is that? So 1/2 inch lift is considered...what? Unnecessary? Cosmetic? How silly. They shoe should be ready in a few days.

Here's hoping this leg length discrepancy and shoe lift is the last piece of the puzzle and his foot stops regressing.

Comfort in a Plan

I've made a plan. I suppose the plan only give me comfort... not Matthew. He only knows that Monday morning means school and has been wracked with stress and tears off and on all weekend. But I have a plan and it empowers me. I will be doing something, rather then sitting back watching my child in agony over what most kids find normal.

I have written a letter to his teacher.

Dear Mrs. ,

As you have noticed, Matthew is feeling very anxious about school. This has been an issue in the past and he is doing better then before. That said, he is still experiencing difficulty and we are trying to come up with some solutions to help with his transition.

Currently, Matthew is finding recess to be especially difficult. He is overwhelmed by the noise and activity. He has told me that he sits on the stairs and cries until the bell rings. I am hoping that with a bit of support, we can make recess more enjoyable and hopefully school less stressful.

He has told me that he is scared without an adult that he knows amongst all the children. I have told him that there are adult supervisors (with the orange vests) outside but he is too anxious to seek them out. I was wondering if it were possible for you to introduce him to one of the supervisors at the start of recess. I am assuming that the supervisors change either daily or weekly, but an introduction to another adult may help him to seek out the supervisor next time.

I have chatted with another Mom of a boy in your class who is also new to the school and is feeling lost. I am trying to get the boys together for a short play date this week to see if both boys could benefit from a friendship. I was wondering if you would be able to encourage that friendship at recess.

We are also working at home to help ease his transition. We talk about school and listen to his fears. He knows that he will not be allowed to stop going to school and that we hold education, schools and teachers in high regards. We stay positive and try to point out the successes he has had already. We are going to start tracking on a calendar when he has a successful morning or afternoon to show him that he is having fun and that each week, hopefully, he will be having more success.

We are also contacting some support people we have used in the past to see if they have any new coping strategies for Matthew to try.

We would be grateful for any suggestions from you as to what else we can be doing at home to help out. Please feel free to contact me at

So Monday morning at 7:55 am I am going to call the school and see if I can talk with his teacher. Failing that (or maybe just because) I will send the letter onwards to her.

I am also going to try to talk to the other boy's mom and see if he can come over Monday afterschool.

I am also going to call his o/t from last yr and see if he has any suggestions. If he can help, we would gladly pay for private sessions. I have searched for pressure shirts (deep pressure vests, weighted vests and compression shirts) with little luck. I am going to ask if the o/t has any leads.

I am also going to call his psychologist from last year and see what she can offer.

I feel better. Unfortunately, Matthew, does not.

Hope...

Matthew has been doing well with his newest AFO. I was worried at first that he was going to need some adjustments, but it seems to be going better then I expected.

Today, he wore his AFO for 5 hours. I noticed he was hopping on his right foot and asked him if his foot hurt. He said, yes. I said, let's go take your AFO off then, but you have to take your sock off and show me where it hurts. With his sock off, I can see any blisters or rub marks. Helps me narrow down what is going on, and where adjustments are needed.

So he took it off and pointed to his long scar on his instep. It is not a spot where an edge touches. I was puzzled and said, really? He said, yes Mommy, but really deep.

Ohhhhhhhh.

Ever have one of those moments where everything stops for a split second? I had one.

What does that mean? I am not sure, I am not a dr, or a p/t, or an orthotist... but to me that meant that his foot was sore from being stretched into a straighter position. Which is the goal.

So, bad mommy here, but I am thrilled that he hurts. It means that for the first time in a long time, his foot was stretched into the proper position for 5 hours.

Don't get me wrong, his foot is still not in nuetral. He will still need the next surgery sooner then anyone had anticipated. But maybe, just maybe, this latest AFO will keep his foot loose enough that he can go farther with the next step.

I can only hope that this is the turn we have been praying for.