Dig

In this world, some people have the gift to dig deep down into their soul and make things happen. We all saw it this week with Joannie Rochette making the decision to compete despite the sudden devastating loss of her mother days before the biggest competition of her life. That kind of stress would make most of us crumble. Yet, she was able to dig deep down and find the strength and determination not just to skate, but to compete with the world's best and bring home a medal.

That was on my mind when I watched the boys at their second skating lesson.

Steve was not able to tape Matthew's foot before skating. The skin on his foot was so degraded it could not handle tape. The skin on almost half of the bottom of his foot has peeled off leaving a dry, scaly mess. The top and sides of his foot are so dry that the skin has cracked and is bleeding in places. The result of casting, taping, and dry chinook weather here in Alberta. It is slowly recovering, but his foot won't see tape again until next week.

So, he skated with out tape, without his brace. Here is a one second clip of what his foot looked like completely unsupported in a skate.



I know. A lot of kids learning to skate will have weak ankles and will turn in or out on them. But this is different. It is more prominent, it is one foot only, and it makes him fall...a lot.

Here, they were to scrape off a star the teacher drew on the ice. Ryan (blue with orange stripe) had no problem. Matthew struggled with that left foot.



Ryan said to me at bedtime last night "Mommy, I love skating and I am a better skater then Matthew!" I told him that yes, right now he is doing better, but Matthew's foot makes it hard for him.

Right now, Ryan is skating circles around Matthew.



But Matthew knows how to dig. As I overheard the mother beside me say while watching the skaters "Wow! did you see the determination on that little boy's face?"

And determined he is. You see, for me, if I was struggling that much to skate, spent half the lesson on my butt, the other half almost falling down, I think I would throw in the towel. But not Matthew. Somewhere in that little boy is a huge spirit ready to soar.



Yes Ryan. Right now you are a better skater then Matthew. But keep looking over your shoulder. Matthew knows what he wants and he can dig deep for it.

A Story Of Falls And Smiles

Another first that is a long time coming.

The boys had their first skating lesson today. They were so excited. After trying to find skates to fit Matthew's brace, we decided to try without it (but had his foot taped by Steve to help). It took a few tries to get his foot in without the toes rolling under, but we managed and I sent them out onto the ice for the first time.

There was a lot of this.



And a lot of smiles

and some more falls.

I like to call this one "my foot has a mind of it's own"



It didn't seem to matter how many times they fell, they always got right back up with a smile on their faces.

Eventually, they started to get it...and of course had to be faster and farther then the class.




They had a great time and I was so proud.

Now, onto the scrutinizing side.

If you look at every video of Matthew falling (green and grey jacket), you will see his left foot drift forward, knocking him off balance. He fell. A lot. More then any other kid on the ice. But each and every time, he smiled, got up, and worked harder, jumped higher and went faster. Because, that is Matthew.

I asked him after if he wanted me to find a pair of skates that his brace fit into. He thought about it and said no. I think that is a wise decision. Brace free in skates can only strengthen that little foot. Makes me even more proud that he decided that on his own.

Will leave you with Ryan's first jump combination. Double axel double toe I believe...

What A Difference A Cast Can Make

First of all, thank you all so much for your comments here on the blog as well as the numerous emails about cast removal. Knowing that all of you are as frustrated as I and looking for other options for us is so wonderful. Thank you again.

I know I answered most of you through email, but wanted to answer here as well. Dr. Dobbs casts older kids with a combination of plaster and fiberglass. He does plaster from the knee down, then when that is dry to the touch, they cover it from the toes to the top of the thigh with fiberglass. And then, they are so nice as to add a stripe for Matthew. Here is a picture of the latest cast.


When Matthew was little, the fiberglass could be peeled off. These casts can not. And the plaster and fiberglass adhere to each other, so they can not be removed separately. They are generally so tight around the foot, the only way to remove it is to cut it with a saw.

We got lucky today. The doctor was more experienced. She admitted she had never removed a cast quite like this one, but she wasn't afraid of a challenge. She made the cuts down the sides properly, but still ended up removing it in 4 pieces. MUCH MUCH better then the last guy. So, I have her name and she said she would do it again for us in June... if needed. Yay!

And the best news.

Before a Dobbs cast.

After one week in a Dobbs cast.

We are all thrilled beyond words, even the boys.

Never underestimate the power of casting. What a difference a week can make!

Why Are Some Things So Difficult?

Get a cast in the US, have it removed in your home town.

Easy task, right?

Wrong.

I am so frustrated. For the past two days I have been on the phone, leaving messages, calling new places, talking to numerous people to try and have this kid's cast removed.

Yes. We did this in October. I called our GP. Her office directed us to a walk in clinic (like an urgent care facility in the states) where I was able to book an appointment to have his cast removed. But the doctor that removed the cast was not very skilled. Even after instruction from me (I have some prior knowledge of cast removal...last year alone Matthew had something like 7 casts) he decided to remove his cast is small, hand sized chunks, over heating the saw and even pushing through and giving Matthew a small burn on his leg.

I was not pleased, neither was Matthew. We decided NOT to go back there again. Saddly, I did not get the doctor's name. HUGE mistake on my part.

So, back in Canada, I get on the phone. I called our Health Link (a service where you can talk to a registered nurse for advice). They had no idea where I could go. Told me to call some of the urgent care facilities.

I called the Children's Hospital. The main line suggested I talk to emerg. Emerg said I could go there but because it was not a priority, he would most likely wait for hours and hours. And not to come until AFTER 1 pm when an orthopedic specialist would be there.

I dug through some papers and found the orthopedic clinic number at the children's hospital and called them. They will only remove a cast with a referral from a doctor.

I called our doctor's office. I was told that a referral would take weeks. They suggested a walk in clinic...the same one we had visited in October.

I dug some more through old papers and found the card of the 'cast lady' who did most of Matthew's casts in the past. (Here, the doctor's don't do the castings...yes, that should have sent red flags to me years ago...but that is all behind us now) I thought maybe if I could talk to the cast lady, she would take pity on us and remove his cast. She did not answer her phone and I had to leave a message with some one.

I called numerous urgent care facilities and hospital emergency departments. All had the same message, this would not be an emergency, he would need to wait hours and hours. And some said they would not remove the cast without a letter from the doctor who applied it stating what the cast was, the reason for it being on, and when it was to be removed.

I started calling surrounding area hospitals in hopes of a shorter wait time. No luck.

I called other walk in clinics. No luck. Few have cast removal tools.

I called the cast lady again. Got some one else again. Was very rudely told that a cast put on by another doctor would NOT be removed by their facility EVER due to liability. I get that. I don't get the rude tone. Unless our name is written down somewhere for all the black listed patients. Ok, that was rude on my part...maybe I am just mad.

So, it looks like we are at the mercy of the walk in clinic that removed the cast last time. This time, I will have a louder voice. This time, I will walk out if he starts to cut like last time. This time, we may end up waiting 6+ hours in the ER.

I am so frustrated.

Blue

Blue with a green stripe. That is the color of Matthew's latest cast. I shouldn't be shocked...I knew in my heart this was coming. Even brought the crutches just in case. But I still feel bad. Like maybe I could have done something to stop this. Matthew has taken it all is stride.

Dr. Dobbs was in surgery when we got there so Matthew was seen by his nurse practioner as well as Kristina. Both took one look at him walking and decided a cast was needed.

It took a few hours for Dr. Dobbs to finish up surgery and then to cast all the babies before he could see Matthew's foot. After talking with me, he agreed, Matthew's dorisflexion is quite good this time, but his foot is drifting inwards (MA) and his talus is quite prominant. He felt that a cast would be good to get his foot back into position.

We talked about taping and that Matthew's latest physiotherapist also has a degree in kinesiology. Dr. Dobbs thought that was fantastic. He felt that the taping may do more good if we start right out of casting. He wasn't sure how much or how often, sort of left that up to Steve. He did say that maybe the taping will hold his foot longer then the three months we seem to be getting from a cast.

He did say that he wasn't ready for anything drastic for Matthew. He is pleased with what we are achieving with casts. If the casts were only holding the correction for a few weeks, we would need to discuss other options. That this regression is normal for kids with nerve damage. They don't have the ability to pull their foot to the outside so the muscles keep pulling the foot in. That one day, when he stops growing, it will stop turning.

We fly out early tomorrow morning. And it has been snowing since 1 pm. The shriner's have decided to pick us up earlier then what we had originally decided (6:15 am) just in case the snow is as bad as they say it will be. Crossing my fingers we get out on time, we only have 55 min between flights in Minneapolis.

We're Here

We made it safe and sound. Almost feels like a second home when the Shriner who picks you up knows us and the lady at Haven House remembers Matthew by name.

We have made crafts, colored pictures, built a fort, played basketball and soccer in the gym, had dinner, and are now in the computer room. Bedtime in an hour...for both of us.

Matthew's appointment is at 10:30 am tomorrow. Will update when I can.

Answering Some Questions

Been so busy the past few weeks trying to get everything ready for our trip to St. Louis, valentine's day, skating lessons, and the new taping regime that I haven't had much time to answer some of the questions in my blog or that are emailed to me. For lack of time, I hope it's ok to answer them all here.

I have a rather lengthy list of clubfoot blogs (the foot blogs) that are a great resource to some one new to the clubfoot world, but there is one blog on there Dreams and Journeys by Sue who has a little girl who has gone through an aggressive relapse and also has done kinesio taping. She has become a wealth of knowledge in that area for me. She is great at asking questions that I seem to have forgotten to ask. Either that or I have seen it for so long it seems normal to me and needs to be asked again. So, first, thanks Sue!

Some of your questions are tough to answer, but they need to be answered. I will be asking Dr. Dobbs.

Jamie is the other mom who has been a wealth of knowledge. She is not blogging but comments here on a regular basis. We also email a lot. She has a little boy who is two (did he turn two yet Jamie?) who was born with a neuromuscular clubfoot. The only other mom that I have ever chatted with who has a child with the exact same issue. And to top it off, she has an extensive knowledge of occupational and physical therapy. She also has questions for me that again, not sure if I can answer them, but will do the best I can. Thanks for all the info Jamie!

So here are some of the questions.

I hate to say it, but I do see that curve starting up again. Mild (compared to his earlier pictures -- gosh, I keep forgetting about that!) but not as straight as when he came out of the cast. What's doing that?

Good question. I have assumed it is the nerve damage and now the leg length difference as well. But I will be asking Dobbs this specifically to see if we are missing something.

Is this Kinesio tape or something else?

It is something called Elastoplast tape. Stronger then kinesio tape. Jamie commented on this yesterday. Kinesio tape is good for muscles, but this tape works for joints.

As for the MA, we will have to have that conversation too. Maybe taping can help that as well.

Can I send a fax from US to Canada?

Yes! Just need a 1 in front of the fax number. I want to compare NCT tests but the copy I got is really tough to read. I can read the summary but the individual numbers are tough to see. I am going to ask for a photocopy from Kristina when we get there. Then we can compare them and see if we can find some similarities.

How long was Matthew's tape on?

We are leaving it on for 2-3 days then changing it. We started this process ten days ago. By the time we see Dr Dobbs, it will have been on one day shy of two weeks.

Interesting, you said that casting "fixes" the MA. But is that really true? Or is it a temporary fix? This is my dilemma right now -- the casting had worked for a while but, like Matthew, we saw the curve come back after several months. Does casting just hold it for a while?

You got me there Sue. Yes, it seems to be a temporary fix. Need to figure out how to make it a permanent fix...

There is a possibility that people can be allergic to the adhesive

I suppose that could be the reason for the irritated skin, but I think I think if there was an allergy, it would be itchy while wearing it. It is fine on, the only problem is removal. I bought a product yesterday called Remove that is supposed to be a de adhesive. Will try it out today to see if it helps.

And perhaps do some sort of taping post cast to help maintain correction? Putting that strong tape right back on is just too much stress for the skin perhaps

Yes. I am beginning to wonder if we can do something like this. Maybe cast him now. Then, for a few days a month (or something along that lines) tape him to keep position. Almost like casting him occasionally, only this casting he can wear shoes, bathe, and move around like a normal kid. Maybe that would keep his foot in proper position for a longer period of time.

I'm not suggesting surgery for you again, but if Dobbs could possibly fix something surgically to avoid casts, casts, and more casts...just a thought, what do you think?

I was wondering about this. Last year, when Dr Dobbs first saw Matthew's foot, he suggested that if castings didn't work, he could do more surgery. I am assuming (will need to ask for clarification) that he would then do an ATTT seeing he had the PTTT already. I really don't want to do it, but it may end up being a possibility. I am so thankful that Dr Dobbs is a cast first, surgery only if needed kinda guy. I know that if he wants to do more surgery, it is because all other possibilities are exhausted.

I hope I got all of the questions. Please ask away if you have more. I'll do my best to answer them.

We fly out first thing Sunday morning. Have to be at the airport by 6 am. We arrive in St. Louis at 3:30 pm local time so should be at Haven House by 4:30 pm. Will try to update after our appointment Monday. I am still not packed, my house is not clean, but the kid's have skates for their skating lessons that start on the 18th and all their valentine's are done. Oh, and Jamie, we are trying skating brace free. Just using the skate boot for support. If that works, we may try skiing brace free too...

It Isn't Just Me

Matthew had physio yesterday. I could barely contain myself. I was so anxious to see if Steve saw what I thought I was seeing.

It took about a minute for Steve to look at me and say "His foot feels really good"

I had been hoping the tape would help. I had thought his foot felt looser then a week ago. Every day I stretched it, I thought it was looser. But I was scared to place so much hope on a few strips of carefully placed tape. Until now.

And his talus is back into place. I had to look hard to even find it.

All fantastic news.

But (isn't there always a but?) he is still supinated while walking, even with the tape on, worse with the tape off. That supination will only lead to the talus wanting to protrude, and eventually decreased dorsiflexion.

And the other problem. After a week of taping, his skin is starting to get very sensitive. Tape removal yesterday was painful and his skin looked almost like it was covered in hives afterwards.

We discussed actual kinesio tape which is easier on the skin, but Steve feels it won't hold his foot. The elasto tape he is using is stronger. He doubled up the under tape hoping for a bit of relief for the skin, but I have a feeling this is our next hurdle. Steve said I might be able to find a de adhesive spray. I have used it before to remove heart monitor leads from the kids after surgery (and NICU stays) but not sure if I can find some at a drug store. Will have to call around.

And now I am conflicted. This may be the answer to stopping the casting this time. But I am worried about the supination and the MA (metatarsal adduction) we are seeing



Casting fixes both those problems.

Maybe we started the taping too late? Maybe if he is casted, we can start taping earlier to prevent problems? As long as we can find a way past the skin problem?

So many questions. So few answers.

Kinesio Taping

Matthew has been taped for almost a full week now. We had the tape changed on Friday and I am trying not to get too excited, but I think his foot looks good taped. He is still supinated a bit, but nothing like it does without the tape. Without the tape, it looks awful.

Matthew says his foot feels good taped too. He says it feels like his other foot. That can't be a bad thing, right?

And, when stretching him, I think he feels looser. But then again, I am just wishing for that and could be fooling myself.

Steve told me that by the time he is about 10 or 11 yrs old, he will be able to train himself to walk more on the inside of his foot and keep the position better himself. I said "oh good! Only three more years of taping his foot!" Steve just laughed at me.

We are getting a tape change today, then Wednesday (plus physio), then Friday. Then we are off to St. Louis Sunday and he sees Dr. Dobbs on Monday.

I am very curious now to see what Dr. Dobbs says about kinesio taping.