Where will this little foot take him?

For Grandpa and Levi

2011-10-22T20:28:00.008-06:00

Here is a short video I made of Matthew playing football this season. Matthew http://www.blogger.com/img/blank.gifwants Grandpa to see it and also his little foot friend Levi.

For those who are not Grandpa or Levi, this is yet another installment of 'what can you do with a neuromuscular clubfoot'.

Football 2011

He's Got Rider Pride

2011-06-28T21:28:00.005-06:00

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.

Safe and Sound in St Louis

2011-06-26T19:27:00.002-06:00

After a long day of travel, we are here at Haven House in St. Louis. Matthew doesn't want a cast, but doesn't seem to upset when I tell him there is a good possibility. We brought the crutches just in case.

Tomorrow will be another long day. At the hospital by 7:30 until 2:00. Then back to the airport. We arrive home at 10:00 pm, so by the time we clear customs and cab home it could be close to midnight.

Will update Tuesday if I can.

Back To That Foot

2011-06-23T21:52:00.004-06:00

Again, not posting. So much going on. If I find some time, I will share.

Back to that foot. Matthew's next appointment in St. Louis with Dr. Dobbs is Monday. Four days from now. I am now convinced he will be in a cast. So much so that I have cancelled our plans for that week.

See, I was supposed to go to my 25th high school reunion. Yes...you read that right ...25th. But if Matthew is in a hip to toe cast, I can't ask him to ride in the back of a vehicle for 6+ hours. Only to arrive in a place where he can't do any water activities, quading, or anything that doesn't include sitting.

Yes, it is true that I haven't seen some of these people for 25 years. Yes, it is true that I was actually looking forward to catching up. Seeing some of these people, hearing about their adventures. Seeing pictures of their kids.

But that's ok. In the long run, Matthew is what matters. We waited 11 weeks for this appointment. And it is needed. He is on the outside of that foot so bad now that even his teacher today noticed. Not good.

Matthew had physio yesterday. First Steve told me that he could not believe how hard he pushed on his foot. As hard as he does on an adult... and Matthew NEVER complains. In fact, he said that some times he thinks to himself, 'I shouldn't do this, he's only 8'. Wow. Then he told me that I may have something there about that 'callous'. He said that I may be right that there is more to that callous then meets the eye. He was happy to hear that I emailed Kristina and that Matthew will be X-rayed for leg length AND his heal. He also agreed with me that a cast is most likely needed.

Wow.

Did I actually hear that right? Did my always positive 'I don't think he needs a cast' Steve say that? Yes. Bless his heart, when he found out I was cancelling my 25th reunion, he told me to tell Dr Dobbs that he would be willing to tape again, and to teach me to tape.

Wonderful idea. But not the answer. He needs a cast. And even Steve knows that this time.

Matthew knows this too. I have to tell him my suspicions. He is ok with it. Kind of.

Enough negative. Here is today's positive.

I was at the school today volunteering. They had an old fashioned sports day at school. Great fun! Matthew's teacher knows of his upcoming trip because he is going to miss the last two days of school. She told me that both her and the phys ed teacher are both in awe of him. That despite his foot problems, he is one of the fastest runners, strongest athletes, never give up kind of kids they have ever seen.

Yes. That is Matthew.Go hard in everything. Always.

Love that.

The Elephant In The Room

2011-05-31T22:54:00.005-06:00

I haven't been posting. Many reasons. Some easy, some not.

But I need to post about the elephant.

Funny, everyone I know keeps telling me how great his foot looks.

I've told Steve my thoughts. I am sure he thinks I am nuts. That's ok. Isn't the first time. Won't be the last.

I see bad things in Matthew's foot.

He is getting a huge callous on the inside of his left heel. Very odd place to get a callous.

I mentioned this weeks ago to Steve. Being the wonderful ever half full kind of guy he is, said 'maybe he is walking and placing pressure on the inside of his foot.'

Not so odd a statement. E-stim has been doing some amazing things as seen by some previous posts. And, honestly, his mobility in that foot has been really good. Why would I question things?

There are some things that can't lie. The shoe is one. A few months ago, I had to buy all new shoes. They are now worn on the outside. And looking inside, they are torn up on the outside.

What does that mean? In my mind, all bad things.

Today I told Steve (out of ear shot of Matthew) that I was concerned that because of his osteotomy, that bone was being laid down, and causing issues. He said he would take a look and let me know.

His thoughts after were good. (Did I mention that I love Steve?) He doesn't feel any rough boney spots. No tenderness. Felt that his foot felt good mobility wise. Thought that his outward movement was the best ever.

Yay!

But here comes that elephant. If everything is wonderful, why the callous, why the walking on the outside of his foot? I mean, it is not an occasional thing. He is ALWAYS on the outside of that foot. I know, I am the MOM. I will see things there, not there, and almost there. I am concerned. And I am seeing things that shouldn't be.

Matthew's next appointment with Dr Dobbs is June 27. He is due for x-rays to check for leg length discrepancy. I will be asking for an x-ray of his heel.

Looking for that elephant.

Another Day, Another Throat Swab

2011-04-27T13:19:00.002-06:00

Poor Matthew. Back to the doctor's office because his last throat swab came back positive for strep. That makes 2 positives in 2 weeks with a week of antibiotics in between. He finished his second round of antibiotics (and by second round I mean second round in as many weeks) yesterday. We find out Friday if this latest swab comes back with strep yet again.

Good news, all other blood work came back normal.

Other good news, we finally have a referral to see an ENT (ear, nose throat) specialist.

Bad news is it could take 2-3 months for an appointment.

This is progress...right?

E-Stim Update (7 months in)

2011-04-19T19:10:00.002-06:00

Since buying the E-Stim machine in the fall, Matthew gets E-Stim about 4-5 days a week. I may be biased, but I think we are seeing results. Let me know what you think.

A year ago, before E-stim, this was the flicker that we saw.

This is what we are seeing now.

Did you see him move his foot outwards? Did you see his little toe move independently of the other toes?

And Matthew even surprised himself when he saw his big toe moving independently!

I think the best part is near the end (when Ryan is pointing out toe jam) you can see Matthew's left hand doing what his foot is doing. It takes a lot of concentration for that small movement.

They may seem like small steps, but in this journey, they are big leaps!

Here We Go...Again

2011-04-17T14:15:00.002-06:00

Matthew finished his antibiotics on Friday morning.

Saturday morning his throat was sore. By Saturday afternoon, he was fading fast, begging for a nap, then later, begging to go to bed.

Took him to the doctor's this morning, looks very much like strep again, or is that still? His ears are good, but his throat and tonsils are terrible. He is now on yet another round of antibiotics, this time for 10 days.

And finally, he is getting blood work. Testing him for mono, liver function and your regular CBC. Why liver function you ask? Well, for the first time, a doctor checked his abdomen and he is tender, especially around the liver. After reading, Mono can cause a swollen liver...but best to check it out and make sure.

And then there is the nodule on the back of his neck...she wants it watched and looked at again if this round of antibiotics doesn't make it go away.

I hope there is no more blogging on this topic, but I suspect there will be more to come.

Need A Laugh?

2011-04-14T11:53:00.002-06:00

Maybe you have seen this already, but I just found this you tube video and had to share it. Cracks me up!

Twin Baby Boys Have A Conversation

Spring Time In Calgary

2011-04-14T10:54:00.006-06:00

Here, in Calgary, we ALWAYS get snow in spring. Always.
Don't believe me? Check here for last year May 1.

This is what we woke to this morning.

Yes, that is my ruler measuring the snow.

Yes, that says 19 cm (7 1/2 inches) of snow.

Check out my candle holder!

Should be some great skiing conditions for the weekend. Can't wait to hit the slopes!

Feeling Melancholy Tonight

2011-04-12T22:11:00.003-06:00

I logged on tonight to blog about skiing. Instead, the music in the background is sending me other places. Sara McLachlan has a beautiful and haunting voice. And takes me places where I may not want to go.

I wanted to blog about Matthew's skiing. To give those others following a few years behind Matthew's journey some inspiration. That even with the cards he was dealt, that yes, skiing is something he can do. He can ski the green runs and even the blues after only two short seasons. Amazes me that even though he skis without his AFO that he can still make turns both left and right with equality. That even though he favors that right leg, the left at times seems just for balance, that doesn't seem to favor one direction for turning. He can turn just as quickly both left and right.

But Sara has taken me from those wonderful thoughts, back to the doubts, the what ifs. It is not a place I go willingly. Not a place I want to be. I truly believe in making informed choices based on what we know, and no regrets. But sometimes, I sneak back there...begrudgingly.

Maybe it was the email I got from a clubfoot group that had a video of kids being treated from birth by Dr. Ponseti having wonderful outcomes.

Wishing that 8 years ago I had been smarter, more diligent. Less trusting. That I had sought the answers then like I do now. But, then I wonder. Would it had made a difference? Or would we still be sitting here, tonight, at the same point?

Those who know me well, know that one of my mottos in life is no regrets, no second guesses. It is a motto I chose many years ago, but sometimes, in the wee hours, it is hard to live up too.

Sometimes I feel we are breaking new ground. Making trail for those others who are finding themselves on this unique road. Some days it is exciting and wonderful. Others, it is long and laborious. Some days I wish for that easy road.

I know that tomorrow, I will be strong again. I will be ready to face Matthew when he challenges me about wearing his AFO. When he tells me that some one called him 'robot leg', ready to give him the strength he is going to need.

But right now, I don't feel like I have what it takes. But he can't know that. He needs to know that I am strong. That he is strong.

In the words of Sara Mclachlan

'There is always some reason
To not feel good enough,
And it's hard, at the end of the day.'

'And everywhere you turn,
There's vultures and thieves at your back'

And most importantly

'You're in the arms of the angel,
May you find some comfort here.'

Tonight, I am looking for comfort.

Sick Kids...Again...wait a minute, didn't I post that already?

2011-04-11T12:05:00.002-06:00

Yup, sick kids again.

Two weeks ago, Ryan had a fever of 40 C (104 F), then his ear started to hurt. Took him to the doctor who said no infection, just fluid. A day later, all pain gone.

I thought good.

Not good. Then his ear began to drain icky stuff. Yup, perforated ear drum.

Then, Matthew got sick, again.

Took them both in to the doctor.

Matthew has an ear infection and strep throat.

Ryan has no hole in the ear drum (most likely already healed over) but lots of lovely pus behind his ear drum.

Both on antibiotics. Again.

The difficult part is, Ryan is allergic to penicillin. So he is on Biaxin.

Matthew gets upset tummy and terrible diarrhea with Biaxin so he is on penicillin.

The doses are different, and one gets it twice a day, the other gets it three times a day.

Crossing my fingers I don't screw it up. So far I only once tried to give the wrong dose. Lucky for me the kids stopped me. Whew!

They are now on the mend, back at school. I am trying to play catch up with housework. Hopefully will get a chance to post about skiing in the next few days.

Frustrated and Thankful

2011-03-24T09:49:00.003-06:00

I am trying to set up Matthew's next appointment in St. Louis with Dr. Dobbs. He has become so busy now that it is really hard to get in to see him at Shriner's.

I sent an email to Kristina to see what days from April 18 - June 27 we could come in. Seems that of those 11 weeks, he is only available for 2 dates, and one of those is the only date that doesn't work for us because Craig can't take that day off of work.

I am so frustrated not because of the heavy workload Dr. Dobbs and his staff have taken at the Shriner's recently, but because of Matthew's old surgeon here.

For those who don't know the whole story, you can read it here. The short version is, when I asked Matthew's pediatric surgeon of 6 years if we could possibly go to the US for a second opinion, he was very rude and condescending to me, telling me that the doctor I had found was a nobody, that I had been internet shopping and that he refused to sign the paperwork that would allow me to obtain out of country insurance to see Dr. Dobbs. He happens to be the head of pediatric orthopedics in the city and works with all the other surgeons here. So, with him refusing the sign the paper work, my only other option was to go through Shriner's. Which we did and were so fortunate to have them immediately start the paper work for Matthew to see Dr. Dobbs.

And now, with Dr Dobbs so busy, he is now seeing older children at the Children's hospital to try and relieve some of the workload at the Shriner's. If it were not for the arrogance of the surgeon here, we would be able to see Dr Dobbs at the Children's. So frustrating.

And, I think I recall a clause in the paperwork for out of country insurance stating that if you start going out of country before obtaining the insurance, that you can not go back and request it after the fact. So, even if the surgeon here had a change of heart, my hands are still tied.

Frustrated. In fact, beyond frustrated right now.

And yet, so thankful.

Kristina (Dr. Dobbs' care coordinator) has spent the better part of the morning emailing me back all kinds of information to try and get Matthew in to see Dr. Dobbs at the end of June. Dr. Dobbs, Kristina and the team are beyond busy at the Shriner's and yet, I still get emails back immediately and they are bending over backwards to make it work for us.

And so thankful to the Shriner's, who took one look at Matthew's file and Dr. Dobbs' credentials and knew right away that this was the doctor for Matthew. AND had the paperwork and funding for him with in a week.

So, today, I am frustrated and yet thankful.

Just For Me

2011-03-22T22:05:00.002-06:00

For a few weeks now, on Tuesday's I have been taking a Latin Cardio class followed by a Yoga Fusion class. I am pleasantly surprised to say I am LOVING it.

I need to be doing more for me. That should be the mantra for all mommies out there. So, I am trying. Once a week, I drop the kids off at school and head to a small fitness studio.

We spend an hour sweating and dancing salsa, bachata, with a little african and belly dancing thrown in. It is great fun.

Then, we spend an hour doing yoga mixed with pilates. The emphasis is on core strength. Right up my alley.

And the best part, it is all taught by a physiotherapist, who knows that most of us are moms desperately wanting our old bodies back, many with joints that no longer resemble that of our former selves.

A perfect mix, just for me.

Today, My Baby Is 7

2011-03-18T10:09:00.006-06:00

I can't believe my baby is 7 yrs old today. I don't know about everyone else, but kid birthdays always bring me back to that moment/day when they were born.

Today, Ryan is on my mind. A few weeks before Ryan was born, we found out that I had IUGR, that Ryan was not growing, and that he would have to be delivered early. We were told all the possible problems and what a stay in the NICU could entail.

7 yrs ago, I was sitting beside Ryan's isolate in the NICU just watching him. I wasn't even allowed to open the little door and hold his hand.

I remember being worried for him, but knowing that he was doing better then everyone thought. I remember wondering how Matthew, only 15 months old, was going to deal with Mommy rooming in at the hospital to be close to the new baby so I could pump and feed him when the time came. I remember wondering how long before all of this would be behind us.

Ryan did very well and 5 days later, came home weighing 4 lbs 3 oz. I remember thinking 'am I even allowed to take such a little baby home?'

He was small (first day home)

But he grew quickly. (1 month and the last day he wore that preemie outfit!)

And today, I can look back and know that all of that is behind us. My boy is 7 today.

Happy Birthday Ryan!

My Lucky Day

2011-03-17T13:55:00.005-06:00

It must have been my lucky day or maybe even week.

I took the shoes with the blue sole to see my guy Tony. Wanted to know if he had that color.

**small world, while I was there, Steve (Matthew's p/t) was there too. Chatted for a few minutes. Seems he now has another clubfoot boy (5 yrs) and was asking me some names, numbers for AFO's and such. Small world, or perhaps the way the world works...

Tony was out for a bit but the guy at the counter told me they could NOT do that shoe. They did NOT have blue.

Crap.

As I was walking out, in walked Tony. I showed him the shoe and told him what I wanted. Not even through the front door yet, he took the shoe and started walking to his work area.

And my man Tony said, "Of course we can do this shoe. I will cut the black part of the bottom off, and put a black lift on. It will look great."

Yay Tony!

Thankfully I chatted with Steve long enough for Tony to get back. Like I said, is it a small world, or just the mysterious way the world works? Had Steve not been there, I would have taken the other man's opinion and returned those shoes...

So, off to school to get the boys. Then down to the shoe store to measure his feet. Yup, I had the right size. Yay me!

I dropped the two left shoes off at Tony's to have the 1/2 inch lift put in. And the other great news? He thinks they will be done by tomorrow!

Talk about luck! But no, I am not going to buy a lottery ticket. I think I have just used up all my luck for the next week...maybe month!

Shoe Shopping

2011-03-16T10:19:00.005-06:00

I love shopping for shoes... for me.

Matthew said to me last week, "Mommy, my shoes hurt."

Sure enough, he has grown out of all of his shoes.

For those of you who have been around this blog for awhile, you know that shopping for shoes for Matthew is never fun. There are so many criteria to meet for his shoes...

So, yesterday, off I went to the shoe store, AFO in hand, child in school, searching for the next size up. (Did I mention he is out of his AFO yet again with another blister? Will need to address that once this blister heals.)

Why do I go without said child to the shoe store? Honestly, it is easier. Because there are so many criteria, the number of shoes to try is limited. And it breaks my heart to watch him find a pair that he loves only to tell him, no, they will never work for you. So, I go to the store, try the brace in as many shoes that work, then buy what I can. Then, he can try that selection on at home. Less disappointment that way.

The criteria while at the store?

1. Must be non-marking.

2. Must have a sole made from a material that can be split and have a lift inserted. That means the sole has to be wide enough, and can't go up in the arch like so many shoes do these days. Oh and color... if there are multiple colors, then the lift will be very noticeable. And that is not cool.

3. His AFO must fit in it.

4. I try to keep the shoe under $40 seeing the lift that is added is $50. That makes each pair of shoes $90 or less.

Yesterday, I walked into a sale and I had a coupon! Woohooo!

This is what I walked out with.

That was a good shopping day!

Once the boys were home, I had Matthew try on all the shoes. Of course, he has his own criteria.

1. Must look cool.

2. Must fit his right foot.

Out of five pairs, two fit...kind of. It seems one size up may not be enough. I will have to get two sizes bigger and see if that is better.

Oh, and of those two pair that kind of fit, one has a sole that is a funky blue color. Matthew loves that. Tony (my shoe guy) may not be able to match it.

At least one pair may work.

Today, back to the shoe store to return 3 pair and buy 2 other pair. And stop by Tony to see if he can match the sole color. Then back home to see if those shoes work. Then return what doesn't, and have a lift put in to hopefully two (indoor and outdoor) pair.

I hate shoe shopping.

First Communion

2011-03-10T11:51:00.007-07:00

On Sunday, Matthew took part in his First Holy Communion.

My little man all dressed up.

He was nervous, which we expected. What we didn't expect, was how excited he was.

Photos were not allowed during Mass. I am not sure I would have been able to take a photo of him receiving his first communion host, honestly, my eyes were brimmed with tears. It was a beautiful moment that will forever be in my heart. No photo could be more precious than that memory.

After Mass.

With Father Avi

We had a celebration at our house after with family and friends. Matthew got some wonderful gifts. I am still surprised that his favorite was ours. A leather book/case that holds a prayer book, rosary and a first communion pin. He has been reading it daily and working on praying the rosary.

Ryan is almost counting the days til his First Communion next year.

Through A Muddled Mind

2011-03-04T12:40:00.002-07:00

This week has been a write off. It started Sunday night with Ryan, and is ending today with all three of us sick.

All week I have had one or both boys home from school. Ryan made it to school for 1/2 a day, Matthew 2 1/2 days. Up every night coughing and asthma attacks. That meant I was up every night dosing with ventolin, vicks vapor rub, tylenol and anything else I could find.

And my reward for nursing these poor sick boys, a head, muddled with the terrible cold they have. You know the feeling, where your brain thinks it knows what it's doing, but when you see what you do, you think that your head must really be attached to a different body. Yesterday it took me three tries to make my fingers, which felt like over stuffed sausages, to dial the right number for the school to tell them who was away for the day.

When the boys woke this morning coughing and wheezing, begging for ventolin, I thought things were going to get ugly...fast. I was pleasantly surprised when a few hours later only Ryan is coughing.

Maybe they are finally on the mend. I know my head has cleared slightly.

I would love to say we have the weekend to recover, but that isn't the case. Matthew has his first Holy Communion this weekend. Saturday is a retreat at the church and Sunday is the big day to be followed with a crowd over at the house after to celebrate.

I know I must be feeling better because I am both excited and panicked at the weekend ahead.

Back In The Saddle

2011-02-26T11:34:00.003-07:00

Or AFO I should say.

Yesterday Matthew wore his AFO all day. Yay! Guess the cut on his ankle was the culprit.

He also had physio yesterday. Steve is still pleased with his dorsiflextion, mainly focusing on his forefront drift (Metatarsus adductus).

So, for the time being, things are back to normal...what ever that means.

Curses

2011-02-24T16:31:00.003-07:00

On Monday, while skating, Matthew got a rub mark that turned into a bloody mess on his ankle from skating.

On Tuesday, he came home from school with his AFO in his backpack rather then on his foot. It hurt.

Understandable.

Now, he has been out of his AFO for two more days.

Will try again tomorrow to see if he can wear it again. Hoping his cut on his ankle is the reason he is out of the AFO. If not, then it is back to the orthotist we go.

Curses.

Family Day Skate

2011-02-22T08:48:00.004-07:00

Yesterday was Family Day, a holiday for many Albertans including Craig for once. Actually, he had Presidents day off, not Family Day. But it doesn't matter, we were all home together.

All four of us have been sick but yesterday we thought we felt good enough to do something. Why not a family skate? So off to an indoor rink we went.

Everyone had a great time, the boys laughing at me for my slow skating. Hey, I have my first pair of skates in about 20 years, and that ice is much harder at 42 then it ever was at 12. Speed is not my goal at the moment.

The boys are improving. They played tag with Daddy while I practiced not falling.

At one point, I skated up to Matthew, who had fallen again. His pants were soaked from falling. I asked him if he was having a fun time.

"This is GREAT Mommy!" he said as he hopped up and skated away.

I watched him skate. It isn't the prettiest sight. His left foot is not strong and wobbles terribly without his AFO. He tried to skate with mostly his right. And he spends a lot of time on his butt. But that doesn't matter to him. What matters is he can go faster then Mommy and it is a lot of fun.

And you know what? That is all that matters to me too. I know he will never be a Gretzky. That's not what I want. His name isn't Wayne, his name is Matthew.

And he is a great one.

Are You Ready For Some Football?

2011-02-14T10:59:00.003-07:00

Over a year ago, Matthew came to me and said

"Mommy, I want to play football."

Maybe to many families of boys that doesn't come as a complete surprise. They see their dads watching football, maybe the superbowl, they play football with their buddies, or toss the ball around with their dads from the time they could walk.

Not here. We don't watch sports on tv apart from a bit of CFL (Go Riders!) when we are around. Daddy here never played football, or baseball, just a bit of hockey. And for me, well, I can barely throw a football without embarrassing myself.

So you can imagine our surprise when Matthew decided football was going to be his sport of choice. I looked into it and found a great organization for football, but it started at age 8. I told him he had to wait a year, and in the meantime, did he even know what football was?

So, out in the yard he went last spring, picked up a football we had and tossed it. I have to say, I was shocked. It was a perfect spiral, and he could chuck that thing far. Since then, he has tossed a football around while camping, at grandma and grandpa's house, and with our friends. "that's quite an arm he has" is something we have heard quite a few times.

So, now that he is 8, I signed him up. Season starts in August.

Now I'm not the kind of mom who thinks her kids are superstars but I am very excited for football season. Maybe it is because I've seen where he has come from. I've seen him struggle with pain, with AFO's, with tripping, endless physio, surgeries, e-stim, with a foot that won't do what it is supposed to do. Just yesterday, we were at the outdoor rink in our neighborhood. He sat down on the ice, mad. I asked what was wrong and he said "Mommy! It isn't easy to skate for a kid with a clubfoot!" I told him that no, it isn't as easy for him as it is for others but that just meant that if he wants it he has to try even harder to do it. He sat for a minute, stewing, then got up and skated, played tag and even tried a hockey stick without another word.

Thanks to many people, this kid is going to play football. Something I never thought he would do. And I get to watch it all, with a smile on my face, and maybe a few quiet tears of joy.

So, are you ready for some football?

Valentine's Day In A Crafters House

2011-02-10T14:05:00.006-07:00

I asked the boys what kind of Valentine's Day cards they wanted me to buy for them to hand out this year. Their answer,

"We want to make them this year!"

I reminded them they needed to make one for each child in their class. That maybe store bought would be easier.

Nope, they want to make them. And not just a cut out heart with the student's name on it, but a unique creation for each child.

It was one of those proud mommy moments mixed with the feeling of 'crap, there goes my table for the next week'. So, out came all the paper, scissors, glue, foamy shapes and everything else you could ever want to make a valentine's day card with.

They are about half way finished. Matthew's have gotten more elaborate as he goes on.

Ryan has decided to stick to one template.

I hope the kids, parents and teachers understand how much work and effort is going into this project.

And a quick update, Matthew is finally on the mend. Even went to school today.

One Step Forward, Two Steps Back - Revisited

2011-02-08T22:17:00.002-07:00

Last week, Matthew went back to his orthotist and had the toe strap on his AFO adjusted. Finally, success! He is able to put it on in the morning, wear it all day at school and walk home from school with no problems. Yay!

And the back steps...

Matthew's tonsils looked horrid on Friday. Took him to the doctor again on Saturday. No fever. No white spots on the tonsils. No hint at all that a bacterial infection was there other then it had been 10+ days since the last doctor's appointment and some mild fluid build up in his ear. Because of that, he was given yet another round of antibiotics.

That evening, the sore throat started. By bedtime, he had three doses of antibiotics. I thought for sure by Sunday evening, he would be right as rain.

I was wrong.

It is now Tuesday and he is just starting to get better. His mouth and throat starting Sunday was bright red covered with white. His throat so sore he couldn't eat or drink.

And to add insult to injury, he is getting his last molars. All four are trying to push through.

Poor kid.

Maybe next week will be his week.

My Morning Funny

2011-02-02T08:16:00.003-07:00

This morning, the boys came running upstairs.

"Mommy! There is a dead fish in the tank!"

Sure enough, one had died overnight. Not a big deal, we have home bred guppies. One dead will not be missed, let alone noticed.

I got the net and removed it. Went to the bathroom to flush it, followed closely by the boys.

Ryan "Mommy, I want to flush it."

Matthew "Me too."

So, they flushed together. They must have felt the need to say something for the occasion.

Matthew "Awwwww, poor little guy."

Ryan "Have a nice day fishie!"

What To Do On A Snowy Cold Weekend?

2011-02-01T14:16:00.007-07:00

This past weekend, the snow fell and the temperature dropped changing our plans of camping and skiing, or even skating.

What to do when the snow is coming down so peacefully on a Friday evening? Bundle up, grab the wine and have a fire outside of course!

This was just what fell in the few hours after school.

Fire in the quiet snow. So peaceful.

Then, on the weekend, I stumbled onto a sale on board games. So I picked up a few new ones.

These were big hits.

Luckily, the weather is warming up. Looks like skating outdoors this week, maybe even some more skiing.

Back To The Orthotist We Go

2011-01-28T12:16:00.004-07:00

I was hoping I had the toe strap on too tight. Nope. The angle is off and needs to be adjusted, again.

So it is back to the orthotist again. And yet another absence from school.

One of these days this thing will fit...and then he will have a growth spurt and need a new one. Isn't that the way it is supposed to go?

One Step Forward, Two Steps Back

2011-01-27T08:14:00.003-07:00

Good news at the doctor's appointment yesterday. Yes his tonsils are swollen, but no signs of a bacterial infection. Looks like he is just fighting your every day virus.

She gave us yet another idea to help him out. NeilMed (Yes, Jenn, this is the pediatric version of the NetiPot) Tried it last night and his nose was clear. The best news, still clear this morning. Yay!

Also started him on Vit D. The doctor was saying that a huge percentage of the population (especially in the northern latitudes) are Vit D deficient. New studies are showing that to get your allotted Vit D from sun, you need to spend 20 min in the sun with a UV index of 7 or higher...naked. I asked Matthew if he was interested in doing recess naked from now on. No go. So I bought some Vit D as well. Did a bit of research and a lack in Vit D can cause low energy and fatigue, and lowered immunity. Maybe that is why he keeps getting sick. Can't hurt.

And the bad news. The toe strap hurts. I am hoping that maybe it was just on to tight yesterday. If not, then it is back to the orthotist we go...again. That will make 3 times in less then 2 weeks. One day this AFO will fit right...one day.

Sick - Again

2011-01-26T09:19:00.003-07:00

Matthew is sick. Again.

Back in October, Matthew started coughing. Tried all the things we usually do for a cough. Finally took him in before our trip, worried it would get worse while away. Everything seemed great, just a pesky cough and nasal congestion.

In November, he was still coughing after we returned. Took him in again. Was told to up his flovent and Ventolin. Didn't work.

In December, took him in again. He was tested for strep, told that maybe a nasal spray would help by clearing is nasal congestion, hence the cough. Tried Hydrasense. Didn't work.

Took him back to the doctor a few weeks ago. This time, tried 2 weeks of antibiotics and a steroid nasal spray. Finally, the cough cleared. The congestion did not.

And yesterday, he said his tongue was sore. I took a look. His tonsils are swollen.

Back to the doctor we go. I'm at a loss as to why he is so sick these past few months.

Hi Ho, Hi Ho

2011-01-25T14:53:00.003-07:00

It's off to the orthotist I go...again.

When we were in St. Louis last month, they decided to add a toe strap to try and stop Matthew's toes from drifting over. Simple concept, should work.

Problem is, the strap keeps slipping to this position.

Then his toe peaks out and the strap is useless. Went to the orthotist last week to try to add some velcro to see if we could hold the toe strap in better position, as well as adding more padding to stop his ankle from getting blisters.

Didn't work.

Back to the orthotist I go. This is what we are trying now.

Hoping this does the trick.

My Christmas Present

2010-12-22T23:19:00.003-07:00

Matthew's cast came off today. For me, and I think for Matthew too, it was like Christmas morning. Anticipation was running high. It was a little bit stressful and filled with excitement.

Found a new doctor who was VERY proficient at cast removal. Took it off in two pieces. The way it should be removed.

His foot looks straighter... but the toes, which were not affected by this cast still, to me are pointing inward. Maybe I am too close to the glass. Maybe I am expecting too much. Or maybe, someone will see what I see.

Didn't get a chance to take photos today. Will take some tomorrow and post to see if anyone else sees what I see.

Cast Troubles

2010-12-17T13:12:00.002-07:00

Matthew's cast was put on to pull the front of his foot to the right. His foot was drifting to the left again. Now, his toes are still pulling to the left, into the cast, causing pain. I was called to the school at lunchtime to see what I could do. I tried trimming, but not sure if I was successful.

Cast removal is next Wednesday.

The kids are counting down for Christmas. I am counting down to cast removal.

Broken Record And Christmas From St. Louis

2010-12-15T23:29:00.005-07:00

I know I sound like a broken blogging record when I say I haven't been blogging, I have been busy... but I have been busy. Sorry. Will get back to blogging if not now, at least in the new year. Thank you to all who called, emailed, or called my parents as a virtual kick in the butt. Will try harder...

First things first, Disney was beyond words. I think I have finally finished the movie... will post it here soon. Suffice it to say more fun then ever thought possible, and even more memories.

Second, St. Louis.
Matthew went back to St. Louis to see Dr. Dobbs on the 13th. Went down as always, hoping for the best, preparing for the worst. Didn't even take before photos. For those of you following for a long time, you guessed it, there was a cast. Even despite Matthew's plea

We were lucky enough to have Dr. Dobbs not only look at, but cast his foot. The best news was that because dorsiflexion was good, just the fore foot was drifting (metatarsal drift) he only got a half leg cast(yes, Dr. Dobbs DOES do half leg casts...Christmas colors of course.

As always, the people we see in St. Louis were wonderful. From Jeff who called us to see if we were stuck in the snowstorm, to the family who organized the craft at Haven House, to Kristina and all the staff at the hospital. You made this trip feel like home. And a special call out to Bill, from the Shriner's, who always seems to find us and make things feel more like home.

Matthew's cast will come off on the 22nd. Just in time for Christmas.

Skating - Round 2 And An Update

2010-10-25T21:06:00.003-06:00

For the past 5 weeks the boys have been back in skating lessons. They both passed level 2. Will have to see where they want to take this next.

As before, Ryan has more control and what Matthew lacks in control he makes up for in speed. If only he would just slow down...just a little bit...

I tried to attach video but for some reason it won't let me...

Quick update, after two doctor visits, a call to a specialist and some internet research I finally have a referral for Ryan. Hoping we don't have to wait too long to get in.

We are off tomorrow morning to Disney. We are all very excited! The boys and I leave first thing and will spend Friday by the pool soaking up the sun. Daddy is already in the US and will meet us there Friday evening.

I still have a busy day. Pick up the boys, take Matthew to physio, over to the neighbors for dinner, back home to shower the boys and any last minute packing. Then off to bed and up for an early morning flight.

Hope I haven't forgotten anything! Will post photos when we get back.

Excuse Me, Have You Seen My Head?

2010-10-22T14:56:00.004-06:00

Wow. I have been running around like a chicken with my head cut off these days. Just realized how long it has been since I had time to blog. Not that I even have time right now...

What's up around here? Well, the most exciting news is we are taking the boys to Disneyworld next week. So I have been planning and getting ready for that. Let me tell you, either there is way too much to do there, or I over plan way too much. Suffice it to say I have been very very busy with that. Excited, but very busy.

Also been trying and trying to get Matthew's latest AFO to fit properly. Any of you with kids in an AFO know what I mean. You take your kid out of school for an appointment, the AFO gets adjusted, he wears it a day or two and says it bothers him elsewhere. So you make another appointment, take him out of school, get the AFO adjusted...etc. Sort of like Groundhog Day. Still stuck, still trying...

Also have our next appointment for St. Louis. We are heading back in December.

Been dealing with a not so fun problem with Ryan. I think he actually has a medical problem called Encopresis. Things have been getting worse lately so I am trying to get him in to see a specialist. Our GP was not forthcoming with the referral so after some research, I am going back in and getting the referral I want. This kid has had pooping problems since the beginning including 18 months of diarrhea (yes, you read that right 18 long long months). We need to see this doctor.

And Craig leaves tomorrow for a hunting trip. So, that means I get to pack up everything for the boys and myself for the vacation as well as get them to Disney by myself, Craig will meet us there 24 hours later.

Along with regular life and volunteering in the school twice a week has pushed me beyond my limits and time constraints. And as I say that, I have to run and get the boys from school, take them to their hair appointments and then run home to make dinner.

Hope to have some good news about Ryan soon, at least good news in that I will be taking him in to see a doctor that specializes in this condition.

Why I Love Calgary

2010-10-07T18:49:00.008-06:00

I know I complain a lot over the lack of heat here the past few summers, but I do really love Calgary. This week, the weather has been beautiful. Many leaves are gone, but some are still clinging tight.

With the nice weather this week, I've been hitting the trails that are 10 minutes from my house.

Up the hills

Down the hills

crossing bridges

It's a great workout, and fantastic at lifting spirits. I mean, how can you not feel great looking down this trail.

The weatherman is calling for 21 C (70 F) tomorrow. I can't wait to hit the trails again. It's days like these that remind me why I love Calgary.

Open Mouth...Insert Foot

2010-10-03T10:47:00.002-06:00

I really did not mean to insult anyone who likes pink or has tattoos with my last post. Seems I may have put my foot in my mouth yet again. Not my intent.

What I was getting at was that Steve seems to have become a huge influence in Matthew's life. Not sure if Steve even realizes it. Thankfully he is a great person. Someone worthy of being looked up too.

As for tattoo's, those who know me know that I have waffled, and I do mean waffled, on the subject for years. In fact, my recent mid-life crisis (more on this topic to come for sure) has caused me to rethink the tattoo again. I am again considering one....right now my good friend Jenn is rolling her eyes at me and saying 'yeah right'...but really Jenn this time, I mean it! Maybe.... lol

Anyways, just wanted to clear up that fact. I don't hate tattoo's...but personally not a huge fan of pink...although I seem to own a few pink shirts.

Picture Day

2010-10-01T09:01:00.005-06:00

It's picture day at school today. Here are my handsome boys.

Ryan (black eye all gone!)

Matthew

And of course, my boys can NOT stay serious for too long.

Did you notice Matthew's mauve shirt? He decided that purple and pink are cool to wear. Why? Because Steve wears purple and pink.

Steve is getting a sleeve tattoo this week. Guess who thinks tattoos are really cool now?

Like A Fish To Water

2010-09-29T12:31:00.002-06:00

That's how Matthew has taken to daily home E-stim. In fact, the other day, he even asked for the "tinglies". Never a fight. Ever.

I should be high-fiving, and yet I'm not. I am worried that his motivation behind this is to get rid of his AFO. That he hopes by doing this, soon, his foot will work and he can get rid of the brace.

Which, is exactly what I hope for too.

And I worry, that if it doesn't, he will stop wanting to do E-stim.

Guess all we can do is take it one day at a time.

And hope. Always hope.

Look What I Have!

2010-09-24T09:18:00.005-06:00

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

2010-09-23T09:22:00.003-06:00

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.

Frustrated And Confused

2010-09-22T14:04:00.009-06:00

Since school started, I have been trying to get Matthew to wear his new brace. He goes to school with it, but it is always off by recess time (2 hours later). I can see where it is bothering him. Have taken him in to our orthotist to try and have it adjusted, but the adjustments that can be made are not helping.

The new brace was made straighter and higher at the toe to try and stop the front of his foot from turning in. I completely agree with that.

Comparison of old AFO and new AFO.

But that is where the new AFO is bothering him. You can see how his foot turns right at that spot.

Braced.

Unbraced.

So, the part of his AFO that is to keep his foot from turning, is causing him to remove and not wear his AFO...which will lead to more turning of his foot. Arrrggghhhh!

Simple solution, cut the AFO down at that foot part. But, the purpose of this AFO was to try and stop that foot from turning.

Round and round we go.

I am going to send an email to Dr. Dobbs and Kristina this evening. See what their thoughts are. We don't go back to St. Louis until December.

In the meantime, he has been happily wearing his old AFO.

Oh, and another update...Ryan's eye. A real beauty in the works.

Here Come The Colors

2010-09-21T19:39:00.004-06:00

And I don't mean the fall leaves!

10 Days To School Photos

2010-09-21T11:54:00.002-06:00

And Ryan got a shiner.

Give it a few days, let the color bloom. I see beautiful blues and purples coming.

Going to be a lovely school photo!

Just In Time

2010-09-20T10:35:00.003-06:00

Matthew's foot is healing nicely. Steve took a look and thought it was a minor sprain. Hooked him up to TENS on his foot and E-Stim on his lower leg. Told him to be nice to his foot. He is back in his old brace too. Not sure if the new brace is ever going to work, but that is another story for another day.

So Matthew's foot is feeling a lot better, just in time for winter boot shopping. Let me try to contain my excitement.

Not Broken

2010-09-12T12:50:00.003-06:00

Those were the two best words I heard this weekend.

Matthew rolled on his foot. With all the changes with shoes, he has not been wearing his brace and he rolled on his foot. Two days later he was still not putting weight on it so I took him to urgent care.

They were very concerned by the look and shape of his foot until I explained all that has gone on with that little foot. They decided to X-ray both feet to have something to compare.

Good news, there are no fractures that they could see. So most likely a soft tissue injury. He is now in a tensor and back on crutches.

Will be taking him to his regular doctor Monday to have it checked (as per urgent care doctor's advice) and will have Steve take a look on Wednesday to see if he can give us some more information.

Hoping he is off the crutches for school.

Could It Be That Easy?

2010-09-10T09:11:00.003-06:00

After spending most of the morning yesterday scouring four different stores, I was able to find 3 pairs of shoes that were non-marking, fit Matthew's brace and could have the sole split. One pair is $68. After adding the lift price to that, they would come to $118. YIKES! The other two pairs were $10 off the clearance rack. But they were not the nicest looking shoes. But, one of the $10 pair fit with his brace AND with his foot. For those of you without AFO's, sometimes a brace will fit in the shoe, but not with the foot in the brace. Hence the three pairs. (Oh, and I hid the expensive pair only to be pulled out if absolutely needed.)

I had a conversation with Matthew's teacher who was so nice. She apologized about even having to mention this and told me (after she found out about the brace and lift) not to worry about it. I told her that having been a teacher, I understood the issue and not to worry, it would all work out.

Then, I looked at Matthew's outdoor shoes. I tried to get them to mark my kitchen floor... my poor floor...nothing. Hmmmmm. Could I just switch his indoor shoes for his outdoor shoes?

I sent them this morning with a note to his teacher to let me know if these shoes mark the floor.

Could it really be that easy? Maybe I should buy a lotto ticket.

Crash

2010-09-08T22:44:00.002-06:00

Did anyone hear that? That loud crash a few hours ago? That was my train...coming off the track. Just when I thought I had everything under control.

I got an email from Matthew's teacher after coming home from Matthew's physio appointment.

I hate to request this because I know they are brand new shoes, but unfortunately Matthew’s shoes are leaving black marks all over the floor and our caretaker is feeling a bit out of sorts about it. I was wondering if he has a pair of shoes with white soles at home instead that he can use at school?

Thank you

Crap.

I thought I had it. I was so excited to have two pair of shoes that could have a lift put in, fit the brace, and Matthew liked. Forgot the last parameter. Marking the gym floor.

Crap.

Guess I know what my day is tomorrow. Off to the shoe stores. Find a pair of shoes that fits his brace, has a sole that can be split, and is non-marking. Oh... and that the kid likes, at least some what.

Wish me luck.

Back To School

2010-09-08T13:12:00.008-06:00

The boys went back to school last week. Things have gone really well. Better then ever before. Yay!

The pain in Ryan's face is from the sunshine, just goes to show how little of it we actually saw this summer.

Ahhhh, shade. Much better.

Back to school means all new stuff. Which always means new shoes for Matthew. Always a struggle to find a shoe that he likes AND fits the brace. AND now one that can have the sole split and a lift added. AND it adds $50 to each pair of shoes. I don't even want to add up how much money is in this photo. And I thought girl's shoes would be expensive.

That should do it for foot wear... until the snow flies. Or until his next growth spurt...

Another Weekend, Another Hike

2010-09-06T07:56:00.008-06:00

It's been tough finding rain free weekends. Lucked out again on Saturday so we hiked C-Level Cirque. A little shorter then the last hike, a little higher then the last hike.

View of Lake Minnewanka.

Is that the road way down there?

What a view!

From both sides!

A little goofing off before heading back down.

>

Looking forward to the next hike.

Fall

2010-09-01T11:34:00.004-06:00

I am so disappointed by the horrid summer we had. Only one day of 30+ C (86 F). And, here it is Sept 1 and the temperature is dropping to near freezing at night. Awful.

One positive to this time of year...fresh mixed green salads from the backyard.

Summer Hike

2010-08-30T14:44:00.010-06:00

Before we had kids, we loved to hike in the mountains. We wondered if we would still be able to hike when we had kids. Then, Matthew was born. We wondered if he would even walk properly. Then, when he did, we wondered what he would and would not be able to do. Then, he started to do everything. We stopped wondering if he would do things, and started to wonder when he would do things.

This past weekend, we did a big hike. We took the boys to the Plain of the Six Glaciers at Lake Louise, better known as the Teahouse Hike. Here are the stats.

distance 5.5 km (3.4 miles) to the teahouse - 11 km (6.8 miles) roundtrip
elevation gain of 420 m (1380 ft)
time 2 hours up, 1 1/2 hours down

Both boys did this no problem and are asking what hike we can do next.

So, for those of you with kids with clubfoot, or leg length discrepancies, or anyone interested, here are some pictures.

Coming round the end of the lake. Chateau Lake Louise in the background.

Taking a breather...maybe Matthew is catching a nap.

Some of the wildlife

A rare family photo with the lake and chateau in the background

enjoying some hot chocolate at the teahouse

more wildlife...well, maybe not too wild

getting ready to head back down

And to end our day

In The Yard

2010-08-19T15:16:00.014-06:00

Sharing a few pictures from around the yard and garden.

My first cauliflower crop.

The weather has been very cool here so everything is late, but still growing.

Tomatoes.

Green pepper trying hard to grow

Green leaf lettuce

red leaf lettuce

head lettuce

Spinach

Ivy Geraniums

Can never remember the name of these flowers

My clematis grows like a weed. I just love it.

A Trip To The Farm

2010-08-19T15:00:00.006-06:00

We are back from the farm in Saskatchewan with enough time to do laundry, have physio, run errands, and buy groceries. Back out we go, this time camping in Kananaskis.

Just some quick photos of the past week.

On the farm.
Stepped off the quads, straight to the cats.

A little target practice.

Ryan is actually a really good shot. He can't wait to go hunting with his dad.

Summertime Fun

2010-08-11T16:28:00.004-06:00

Been a busy summer.

Here's a peak at the boys' skateboarding lessons.

Matthew

Ryan

Ryan trying to drop in

Matthew

Looks like Matthew is no longer afraid of rides.

Only a few more weeks before they go back to school. I thought I would be cheering. I'm not. Still have so much left to do.

Fate?

2010-08-02T23:21:00.018-06:00

I really don't believe in fate. I truly believe that we are in control of our own actions. That said, I am left to wonder if there isn't some greater force out there guiding us, providing hints as to the direction we should take. It is either that or I am having a mid-life crisis and everything is being over analyzed.

Case in point.

We always drive straight through. Always. We go as far as we can without stopping. It is the way it was when I was a kid, it is how I do it now.

When I drove the boys out to Vernon, we made the 6 hr drive in 6 hr 45 min. We made two extra stops due to upset tummies and malfunctioning videos, that and the road construction. I was not impressed.

At the B&B we stayed at, the owners chatted with us a lot. He was originally from a small town only 45 min from my hubby's home town. Makes for lots of chit chat. The morning we left, he said

"When you drive home to Calgary, stop. Go for a hike. Stop for ice cream. Whatever it is, stop."

I took this as advice from some one who had lost his wife to cancer. The 'stop and smell the roses' speech from one who definitely has the life experience to give this advice.

So, this time, we did.

We stopped at the SkyTrek Adventure Park. The boys had the best time!

Strapped in, ready to go.

They start them off easy...

And before you know it, you are they are 10 feet above you, reaching for things so they don't fall.

It isn't long before they are pushing themselves...with some encouragement from below.

It was a great place to stop. I can't wait til they are old enough to go through the adult course and all 4 of us can go. The boys will need to shout a lot of encouragement to their chicken mommy...

Now, I mentioned fate.

We arrived just west of the town of Revelstoke to a dead stop on the highway. We had an idea something was up when a trucker flashed his lights at us. We were there for an hour before hitting the Big Eddy Rd that led us through the back end of town. We thought we had bypassed what must have been some horrid construction and were high fiving as we got back onto the highway...only to meet another flag person.

This time, we talked to her, after giving the poor girl a bottle of water. There had been an accident on the #1 highway. Multiple vehicles involved. Multiple deaths. The highway was closed for the next few hours.

Did I mention fate? Had we not stopped...we would have hit that section of the highway at around the same time. The profoudness of the situation did not slip by me. Seriously. We NEVER stop.

Except for this time.

Call if fate.

Call it fluke.

Call it whatever you like.

At the urging of a virtual stranger, we decided to stop. And we are all safe. The message was not lost on me.

We ended up sitting at an outdoor patio for a few hours. The boys caught grasshoppers, we had nachos. When the road reopened, it looked like this.

and more of this

But it didn't matter that it took us 12 hours to get home. We were safe. The seriousness of the situation was not lost on us.

And, I have to say, the boys took the trip better then expected. They never complained, never fought.

Maybe the secret was the chocolate...

Was it fate? Was it luck? Had we drove straight through would we have even realized? Doesn't matter. The fact is, we did stop. We did find out about the accident. And we are all safe.

And, I am leaning towards some sort of force that leads us...if we choose to follow.

More on this topic to come.

Sun, Sand, Heat...What More Could You Ask For?

2010-07-29T22:42:00.018-06:00

Here in Alberta we seem to get sun, but we lack in sand and heat. Either that, or I was just born in the wrong place. I love the heat and water. Can't seem to get enough of it.

Went to British Columbia for holidays. Nice of my parents to move to a hot dry place with lakes galore...what a great place to visit!

I drove the boys out and the first activity we did was pick cherries. YUM!

I think the boys enjoyed it as much as I did.

"Mommy, I didn't eat any cherries"
btw, that is an old tattoo on his forehead

The beaches in the Okanagan are outstanding. 33 C ... 91 F. Nice and warm!

The boys got metal detectors for Christmas. Is it wrong of me to let them find this dude and follow him for 30 min?

Ryan made a friend.

Lucky mommy isn't afraid of beetles.

I love that the boys love to swim.

I have to add this photo for two reasons.
1. No one around. Undisturbed sand.
2. Look at that left foot. (gosh..I need to stop)

Then, maybe the best part, my parents were so wonderful to take the boys for a few days and we got a 'child-free' weekend. It has been two years since we have both been away from the boys overnight. HEAVEN! What did we do? Go on a wine tour of course! Self drive is so nice for finding smaller wineries. Driving around in 33 C/91 F weather with the windows open. Heaven!

Our two new favorite wineries are
Silver Sage

and

Desert Hills

We stayed at the most amazing B & B.

Willow Beach Bed and Breakfast

Beautiful.

Peaceful.

The best B&B I have stayed in. I would highly recommend it.
Hummingbirds on the breakfast deck.

Enjoying the sun and heat.

A rare photo of me.

We got to see some wonderful old friends who have bought a retirement home in the okanagan. We hope to follow in their shoes some day.

It was a wonderful getaway and now, at home, I am missing the heat and water. Someday...someday.

Did I Just See What I Think I Saw?

2010-07-09T09:20:00.007-06:00

I was chatting with Matthew this morning and glanced down at that little foot, as I so often do. I had to do a double take. This is what I saw.

Do you see what I see? If not, here is a preview of what we used to see.

Jan 2008 pre-op

Jan 2009 one yr post-op

Jan 2010 two yrs post-op with kinesio taping

July 2010

I can't believe it. He is standing with no supination. In fact, his right foot almost looks pronated.

Don't get me wrong, I know he is still walking supinated. It isn't gone, but to see him standing straight on his own blew me away this morning.

This is cause for celebration. And endless thank yous for Dr. Dobbs and for Steve and for all others out there who have crossed our paths and brought us a step closer to our goal.

E-Stim

2010-07-01T11:05:00.003-06:00

Matthew started E-stim last week. I was so excited that I think I put too many eggs in one basket. I prepped Matthew for what to expect. The electrodes were put on his leg and the machine turned on.

10%...nothing.

50%...nothing.

100%...nothing.

I had to swallow my disappointment. I was really hoping for something. Steve said not to worry yet. But it was hard not to.

Yesterday, Steve tried E-stim again. This time he placed the electrodes lower down then turned it on.

Matthew immediately said "I feel it!"

Yay!!

Then, for the next 15 minutes I had to work at keeping him distracted so he wouldn't pull it off. But that's ok. I can distract him. The benefits far outweigh the nuisance.

Matthew will be missing physio for the next few weeks due to everyone's holiday schedules. I look forward to more e-stim for him. Hope one day he looks forward to it too.

St. Louis Through The Eyes Of A 7 Year Old

2010-06-29T09:56:00.014-06:00

So busy round here getting ready for the end of school, dealing with sick kids, and getting ready for trips. Here are the photos taken by Matthew from St. Louis last week.

First, just for fun. This was what the squirrels were doing at 6 am.

Hospital waiting room.

Walking to our room.

Our room.

Chairs in the room.

Shoes off.

Matthew's file.

Matthew's...nose.

Exchanging emails.

New friends.

Casting for a new brace.

The newest AFO.

Today is the last day of school. Hoping that means things will get back to a calmer pace. I need to take Matthew's AFO in to the orthotist here for adjustments. And for a discussion of a leaf spring AFO.

No Cast!!

2010-06-23T15:50:00.004-06:00

For the past year it has felt like groundhog day. Go to St. Louis, get cast, go home, foot turns, go to St. Louis, get cast, go home, foot turns, go to St. Louis...

This time, it was different. This time, Dr. Dobbs felt his foot and said it felt good. We showed him how Matthew is starting to move his foot to the outside. Dr. Dobbs looked up with a look I had never seen before and said, "that's impressive"

And this time, he recommended no cast.

He also recommended starting E-stim with p/t.

What a different appointment. What a great feeling!

Matthew also got a new AFO made and we are discussing trying a leaf spring AFO like the one below.

Need to discuss this more with Matthew's p/t and orthotist.

It has been a busy week but I hope I can find some time to update more details of the trip including meeting another child with the same problem, and some pictures.

Right now, we are off to Matthew's last baseball game, the one we thought he wouldn't be able to play.

Life is good.

Meet Me In St. Louis

2010-06-18T07:33:00.004-06:00

I've met someone...online. Boy, that sounds bad.

Just over a year ago, I found a mom with a little boy (now 2) who has the exact same diagnosis as Matthew. Exactly the same. Clubfoot, nerve damage, leg length discrepancy. It has been a great year of sharing, comparing, asking questions, and trying to figure things out. And now, finally, we are going to meet in St. Louis. Her little boy and Matthew both have appointments with Dr. Dobbs at the same time. Not only that, but we get to fly in Sunday afternoon and visit at Haven House.

I am really excited to see her little guy for many reasons. I want to see another little one with the same issues. I wonder if he has the same gait Matthew had, the same tripping problems, the same look to his foot. He is also sporting a new type of brace that I am very interested in seeing. One that could allow for more calf muscle development.

And I am excited to meet his mom. Talk with someone who is dealing with the same issues of AFO's, shoes, bracing, p/t, etc.

So, Jamie, I am really excited to meet you! If Haven House is funny about leaving messages for each other, we will be in one of two places, crafting in the craft room, or, most likely, running around kicking balls, throwing Frisbees, shooting hoops, in the gym. Oh, or maybe outside hunting for praying mantises. Just follow the noise.

I'll update my blog when I get a chance. Still hoping for no cast, but prepared for one.

Getting Ready

2010-06-16T12:11:00.006-06:00

We leave for St. Louis in four days. Trying to get the last things done before we go.

Crossed this one off my list yesterday. New pads for the crutches.

Old pads.

New pads.

I had to raise them up a level as he has grown so tall. Only one more adjustment left on these.

Matthew was actually excited about the new padding. Hoping that means he is coming to terms with the cast possibility. I hope so. He just received another birthday invitation. This one for a pool party the weekend he could be in a cast.

Camping

2010-06-15T09:47:00.007-06:00

Boys. Nuff said.

Their latest fascination while camping is fishing. The love to go through their tackle boxes, organize, reorganize, compare, and occasionally sneak a lure from Daddy's tackle box.

This is what happened Saturday morning while organizing...something went wrong I suppose. I call it Fishing - You're Doing It Wrong or Gettin' Jiggy With It.

Such a proud mommy moment.

Things did get back to normal, or as normal as boys can be after trying fishing and deciding the sand was more fun. Notice our friend's little girls so clean. My boys did not stay clean.

I didn't get a picture of Matthew. I was either laughing too hard, or was so unfazed by the filth that I never thought twice about it. Here is Ryan, much cleaner then Matthew ended up.

It was a wonderful weekend in the sun with great friends. Just what we needed on the last weekend before heading back to St. Louis and the possibility of casting again.

Heros

2010-06-14T09:27:00.004-06:00

Matthew had physio last week. We talked about the possibility of casting again. Matthew told Steve he didn't want a cast, didn't want to go to his friend's birthday party in a cast because they were going to play floor hockey. He doesn't want anyone to know he has a cast.

Steve told Matthew that if the doctor said he needed a cast, it was important to get it. Then he told a story of when he was in a long leg cast for 6 weeks and played floor hockey in it. Matthew looked disinterested as the story unfolded. He busied himself with his Hot Wheels cars he had brought. But I knew better. He was absorbing and processing every detail Steve shared.

You see, for what ever reason, Matthew doesn't let a lot of people in close. Sure, he is a friendly kid, popular in his class. But when it comes to sharing his thoughts and fears, to being close, there very few. And Steve is one of those lucky enough to have made it into that inner circle. What Steve says is very important to him.

So I wasn't surprised the next morning when he told me he thought he could play floor hockey at his friend's birthday in a cast.

A hero is someone who can be looked up to for their actions. I think this fits.

Thanks yet again Steve.

"I Am Not Going"

2010-06-09T13:29:00.004-06:00

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.

Baseball

2010-06-03T07:30:00.002-06:00

I am really loving baseball, and so are the boys. And they look so cute in their uniforms too.

Matthew wants to be a big hitter

Ryan coming home

I only have one complaint. White pants.

Who ever decided on white pants for little boys baseball obviously never did the laundry.

The Reason Why

2010-05-29T10:20:00.003-06:00

In Calgary, the May long weekend (May 22) everyone rushes out, buys flowers, plants gardens. I never do until the first week of June.

This morning shows the reason why.

My poor willow.

Good news is I can start looking for flowers and seeds next week!

The Dog House

2010-05-28T14:07:00.004-06:00

Last fall, my drier died. I wanted to replace my washer and dryer with a nice new fancy set. The old set was 15 yrs old and the washer was working, but I suspected, not long for the world.

My husband did not want to replace a machine that worked and found a great drier for an amazing price. I agreed to get it only if he promised me a nice, new front loader when this washer died.

He agreed.

So, my washer died. Well, not completely, but it was starting to leak and not spin very well. Even my husband agreed, it's days were numbered. Time for a new one.

We went out and checked what was out there. Shopped around. Started looking for some sales. After all, we had a bit of time, the old one still worked somewhat.

So, what does husband do? Buys his buddy's washing machine, brings it home, sets it up. His buddy bought this 4 months ago and found out he is moving. Will not be bringing it with him. Apparently, it was a good deal.

Apparently, the buttons to choose water temperature and spin speed do not work. Or, as my husband says, "No, they are preset, you can't change those"

Hmmmm, why have buttons if you can't use them.

So, hubby is in the dog house. I am not happy that this machine has been in the house for less then a week and now it seems we need to have a repair man here.

So, to get out of the dog house, hubby decided to do some laundry for me. Well, at least his laundry...save three items of mine. Two socks and a sexy pair of underwear. Why my sexy undies? I can only suspect he thought they may be his reward for doing such a good deed.

He washed said items without my knowledge. Then, put said items into the drier...without my knowledge. Then, forgot about them.

I just pulled the load out of the drier. There was a piece of gum that managed to be washed along with said items.

By the way, I do not chew gum.

Out of a load of laundry filled with his shirts, socks and pants, this lovely rock hard, heat cooked piece of gum was melded to my sexy underwear.

I am not one for revenge, but I am wondering if this little piece of mail that arrived today might just happen to fall into the paper shredder.

Baseball

2010-05-27T10:57:00.003-06:00

The boys are playing little league for the first time and having a great time. I must confess, I really enjoy it too.

So, for those of you who come here to see what a neuromuscular clubfoot kid with a leg length discrepancy can do, here is a short video of Matthew from ball last night. (he is wearing a shoe lift and an AFO)

Baseball, no problem.

Now, those of you with eyes on their own clubfoot kids...watch again and see what I see. That left foot is completely turned in when he runs. Must work on that.

And not to be outdone, Ryan. Can that batting helmet be any bigger? Cracks me up.

Tony Rocks

2010-05-26T09:20:00.003-06:00

Tony knocked another one outta the park. This time, I didn't tell Matthew I was having the lift added. He has been wearing these without comment. Not sure if he just didn't notice, or if he thinks it looks fine.

I can barely see the lift.
Tony rocks.
And so does Steve for the tip, and, well, everything else.

Babysitting

2010-05-24T20:37:00.003-06:00

Been a busy week and weekend babysitting. The boys really enjoyed our neighbor's parrot Akiki.

I have to say, I enjoyed spending time with her as well, but am glad my time is done.

Parrots are a lot of work.

Adding Insult To Injury

2010-05-19T15:12:00.002-06:00

Finally, the boys are on the mend. All that remains is an ugly cough, and a bit of wheezing.

Me, on the other hand, am not a picture of health. Far from it. Still coughing, still sore throat, still exhausted, still head pounding, but a bit better. I've upgraded myself from feeling like crap to feeling like garbage...if that is an upgrade.

And the insult, I woke up with my right eyed glued shut with gunk.

Yup, you guessed it, pink eye.

It's ok, laugh away. I did.

A Quick Health Update

2010-05-15T09:06:00.003-06:00

I took Ryan to the doctor yesterday and it was concluded that he is allergic to penicillin. His throat looked fine, no fever, no other symptoms, just a horrid all over body rash...even the soles of his feet.

So, we stopped the amoxil (finished 7 of 10 days) and started on Benedryl every 4 hours for the next 72 hours.

This morning the bumps on his legs and arms are flat, just red. Still bumps on his body. His face is all red, no single bumps, just solid color.... not sure if that is normal. Crossing fingers we are going in the right direction.

Matthew was up all night with asthma attacks. Wheezing, coughing, trouble breathing. Nothing that his inhalers couldn't handle.

Me, I am still tired, stuffed up, sore and coughing. Maybe when Craig gets home this afternoon I can catch a nap.

I am so glad we canceled our camping trip this weekend.

**Adding pictures**

I took a look at the symptoms of scarlet fever and he really only has the rash part, and the itchiness has settled down, but I will keep it in the back of my mind as the day goes on.

Here is what he looks like right now.

Mommy, I'm Itchy

2010-05-14T09:19:00.005-06:00

It's been one of those weeks. One of those long weeks.

It all started last Thursday evening. Ryan started to cry before bed and said his throat hurt. I took one look and knew it was strep. Off to the doctor on Friday. Diagnosis, strep, possible ear infection, possible tonsillitis. Antibiotics prescribed for 10 days.

Monday morning, I woke up feeling terrible. Headache, body ache sore throat, ears popping.

Tuesday evening was Matthew's turn.

Wednesday repeat at doctors with Matthew. Prescribed antibiotics for 10 days.

Thursday evening. Both boys feeling great...plan to go to school on Friday. I plan to drop the boys off, go home and sleep. I still feel awful.

Friday morning, Ryan comes down and says "Mommy I'm itchy" I look up and see this.

I gave him some Benedryl and called the school to let them know he will be away today. We are now waiting for his appointment at the doctor's office and the rash/hives are getting worse even with the Benedryl. And his throat is getting itchy.

Maybe I can get some sleep tomorrow.

A Cautious Foot Update

2010-05-13T10:50:00.002-06:00

I've been keeping pretty quiet about this thinking maybe my eyes and hopes were playing tricks on me. Now, I think I'm ready to share.

A few weeks ago, during Matthew's p/t, both Steve and I thought we saw Matthew's toes move upwards. Steve was not able to get Matthew to repeat it. He has tried, every week since then, quietly distracting Matthew then tickling and watching carefully.

Nothing.

I try at home when I stretch him.

Nothing.

So I started to try something else. I started asking Matthew to pull his foot to the left (outwards). We've been working on it for two weeks now and I think we are starting to see something.

With Matthew's nerve damage, he was born without the ability to move his foot upwards or outwards. The tendon transfer he had done two years ago was to help with that. We were told it could be years before we saw results. When he was 4 months post op we saw a flicker of movement. It took weeks for anyone else to see it, but for us we knew it was there.

Now we are starting to see a new flicker. His foot outwards and his toes upwards. It is really hard to see, but then, so was the movement 4 m post op.

And Matthew told me he as been working on it on his own. And, he knows what muscles he has to use. This kid never ceases to amaze me.

Here are the latest videos. Let me know if you see it too.

Remembering Mother's Days Past

2010-05-09T22:13:00.003-06:00

I had a beautiful Mother's Day. Beyond expectations. How can I not?

Mother's day will always be a miracle for me. There was a day, not that long ago, I thought I would never participate in this day.

Mother's Day 2002 I was pregnant.

Again.

For the fourth time. After three devastating losses.

I was not positive of the outcome. I hid away. I did not go to church. I did not celebrate. I did not allow myself any positive thoughts. How can one after trying for years. After losing three babies already? How can one find hope? Celebrate?

I remember keeping a low key day. Asking for nothing. Hoping and praying only for a miracle.

We were finally blessed with a little boy that November. And, only 15 months later, another little boy.

Two miracles. Back to back. I count my blessings every day, and feel doubly blessed on Mother's Day.

I want to share two things.

First, what Matthew wrote in my Mother's Day card after being asked to sign it.

"happy Mothers day I hop its Fun have a loving time injoy how it lasts. love Matthew

My heart just melts reading that. There is no gift in the world worth that.

Second, I made this video a few years ago of Matthew's first year. I still love it.
http://www.youtube.com/watch?v=DH0Hh2qrtxc

Happy Mother's Day out there all all of my Mommy friends!

Sunday Bike Ride

2010-05-03T20:35:00.007-06:00

What can you do when your backyard still looks like this two days after the snow storm?

Go to the south of the city for a bike ride.

Sometimes you have to walk quietly

in order to see this

and this

It was a nice day. Good thing too, we are under another winter storm warning tonight... and it is already snowing.

Snow Day

2010-05-01T11:24:00.007-06:00

Winter storms in April are not that uncommon here in Calgary. This is what we woke up to on Thursday morning.

Where are my stairs? Oh and our car stuck on the front lawn...

The backyard patio table.

I heard on the radio that the road in behind the boy's school was impassible due to a very large snowdrift and after calling the school to hear there were five buses stuck in front of the school, I declared it a snow day. So off into the winter wonderland they went.

Snow drift in the backyard. Yes, Ryan is standing...on a bunch of snow too.

Snow fort construction.

We got a lot of snow in this area of the city and two days later we are still anxiously awaiting the appearance of grass. We can see a few spots peaking out finally. Hoping it will all be gone by Monday, in time for the boy's first baseball game.

What Brother's Are For

2010-04-27T10:46:00.005-06:00

By the way, I have no idea why they are wearing helmets...but watching them throw, maybe it is a good idea.

All It Took Was Four Days

2010-04-19T09:54:00.006-06:00

Four days for Matthew's new lift to go from this

to this

We are noticing that the material that was used to make the lift discolors more then the actual shoe.

Luckily, only a little elbow grease restores it to this.

Not sure if it is the material, or the fact that this material has never met Matthew before.

Success!

2010-04-16T09:24:00.002-06:00

This morning Matthew put on his shoes to go to school.

"Mommy, these shoes are way better then the other ones."

"So you like what he did to them?"

"...yeah...but how did he make it so light?"

Success.

New Shoes

2010-04-15T10:16:00.007-06:00

I took Matthew's new running shoes into our new shoe guy. I think he did a great job. Not only is it light weight (I can barely tell a weight difference) but it is harder to see AND it doesn't mark the gym floor because the original bottom is still there.

I was thrilled when I picked it up yesterday...Matthew hated it.

Just a reminder of what the old heavy lift glued onto the bottom looked like

And the new shoe with the sole split, lift inserted and original sole put back on.

Yes, you can tell there is a difference.

But then how could you not. I mean, there is a half inch difference. But from a distance, with a quick glance, I think it is hard to see. And, I'll get better at picking out shoes that will work. You see, I didn't notice the other side had an orange part that ended up being split.

But I am learning. Next pair will be even better.

And, this morning, Matthew didn't even say one word about them as he put them on to go to school.

I know A Guy

2010-04-10T08:00:00.003-06:00

You ever hear this before? Usually happens when you are telling someone about how your car needs repairs but the three repair guys you took it to are going to charge an astronomical amount of money. Or you want concrete poured, but you can't get anyone over to your house to give you a quote. The person you are talking to will respond "Hey, I know a guy..." Not sure about everyone else, but for us, it rarely pans out. Often, their 'guy' has either moved, or raised the prices recently. Often, but not always.

The boys needed new shoes. For those of you with little boys, you will understand this mathematical equation

boys+bikes=missing toes from shoes

Or maybe it is just my boys who drag their feet to turn, slow down, do tricks, stop, etc.

Regardless, they needed new shoes. And, I dread shopping for shoes for Matthew. Not only do I need to find a pair that he likes, I have to find a pair that he likes AND that his AFO fits into. AND now we have the added bonus of finding a shoe that has minimal tread so a lift can be attached.

I know. I had posted about the shoes at Keeping Pace but after finding out I would need to buy them without getting a chance to try them on, I was leery. They may not work for his unbraced foot.

So, off we went to the stores. I lucked out. After 45 min and two stores, I found a pair that fit, had little tread, and, after some fast talking, he tried them on and liked them. Yay! Matthew only had one request...ok...demand. He refuses to have a lift put on the new shoe because it makes the shoe heavy.

The next day, Matthew saw Steve (his p/t) and was showing off his new shoes. I asked Steve what our options are for lifts. Told him why Matthew didn't want to have a lift put on. Steve said "I know a guy..."

I decided to check him out. I stopped in and talked to Tony. Told him what we needed. He looked at Matthew's shoe. Then, he showed me a man's running shoe he had just finished. He said, "I split the sole, added a light weight material, then reattach the sole. I can do this shoe for $50" I looked at the man's shoe. Held it. It felt lighter then Matthew's old shoe with the lift.

I looked at Tony and smiled. I said we'd be back.

I will share photos when I get a chance to get his shoe done. I have a feeling Tony and I will become good friends.

So for any of you who need lifts in Calgary, I know a guy...

If You Don't Like The Weather

2010-04-08T17:44:00.006-06:00

They say here in Calgary, if you don't like the weather, just wait five minutes. Today was like that.

This morning at the zoo.

Then, at dinner time.
(I tried to post this earlier, but we lost power...due to the snowstorm)

I know, we need to moisture, but I am patiently waiting for what the next five minutes will bring.

Progress in Six Weeks

2010-03-26T09:30:00.003-06:00

Six weeks was all it took for the boys to go from beginner skaters to this.

Ryan

Matthew

Yes. Matthew still skates mainly on his right foot. Yes, he still has a weak ankle. No, he will never be a great skater. But that is ok. He loves it, and tries hard. And he has made great progress. At one point, I was worried Ryan would pass the class and Matthew would not. Turns out, their report cards are identical, except for Matthew's extra comment of "Slow down if you need to." Nope, he doesn't need to or want to...ever.

Back a few weeks ago I blogged about Matthew being able to Dig. And I said

"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."

Well Ryan, you no longer have to look over your shoulder to find him...

I leave you with one last skating video, because it makes all of us laugh when we watch it. (No children were hurt in the making of this video.)

So, what do you do when skating is over? Learn dangerous tricks on your bike of course. (Ryan was hurt in the making of this video...he scraped his knee)

Ryan still needs some practice.

Matthew needs to stop practicing, Mommy is getting gray hairs.

It's All An Illusion

2010-03-25T09:40:00.003-06:00

From time to time I have others tell me that I seem to be very organized or that I have it all together. I almost always reply "It is all an illusion."

To me, life is like juggling, only I can never keep all the balls in the air at the same time. Usually it is the 'house' ball that I can't keep up with. I am forever digging out of mess, laundry, groceries, menu planning, cooking. But lately, it seems I have dropped the 'Jo-Ann' ball. It fell weeks ago and rolled somewhere, lost for now.

Maybe part of the problem is my thinking. Lately I have been thinking a lot about just how long we have been at this foot issue. March 16 marked six years of the secondary diagnosis of nerve damage. Seven years now with no end in sight yet. Seven years of doctor appointments, casts, surgeries, AFO's, p/t, fights to wear said AFO, fights to go to said doctor appointments. Will there be more casts? Most likely. Will there be more surgeries? Possibly. Will there be more AFO's, p/t and doctors appointments? Definitely years of that to come. Some days that weighs heavily. I need to stop letting it do that.

Maybe I've had too much on my plate these days. Lot's of important decisions to be made. Questions to be asked and explored.

Maybe this is how most people feel. Maybe there are many other illusionists out there, struggling to keep all the balls in the air.

I think I need to go and find that lost ball. I'm just not that happy right now with it gone.

To my fellow illusionists out there, you know what that means. I'm going to have to drop something else for awhile. But that's ok. As long as it looks good from the outside...right?

An Exciting Find!

2010-03-04T10:11:00.006-07:00

I was checking out a yahoo group for clubfeet today when I found a post by a mom about shoes for AFO's. I have seen this site before

Hatchbacks Footwear

And was not thrilled. The shoes don't look like normal shoes for an older child.

So when I saw this site

Keeping Pace

I took a cautious look.

What I found thrilled me! Normal looking shoes! That are specially made so it is easier to put on without destroying the back of the shoe. And specially made to allow for a child who only wears one AFO. AND the best part... specially made to HIDE a shoe lift. That's right, they hide the lift between the shoe and the sole. Brilliant. Obviously designed by a frustrated mom like me. I took a peak at the designer stories.

I had tears in my eyes when I read this

I have come to dread picking up our new personally designed and meticulously crafted AFOs, because it would be followed by endless hours of shopping and searching for a pair of shoes.

I can truly relate.

I called the company immediately and found out they do have a distributor here in Canada but I need to order through an orthotist. That shouldn't be a problem. And they are pricey. Not sure how much, will have to look into it. But, sometimes, cost is worth it.

Now off to spread the word to a few moms I know who have little ones with leg length discrepancies and Jamie with a 2 yr old with the same condition as Matthew. I bet they will be as excited as I am!

Inspiration Of Olympic Proportions

2010-03-03T12:43:00.003-07:00

Maybe they watched too much of the Olympics.

Here is an early morning training session before school for their two new favorite sports,

skeleton

and luge

and of course lot's of giggles

Oh the fun we have before school.

Eyes Up Mom

2010-03-01T10:55:00.002-07:00

Most days, my eyes are downcast at that little foot. Watching, processing, analyzing.

But some days, I need to take a break from that. This video shows exactly what I mean.

The boys wanted to go to the neighborhood rink Friday to skate. Their third time on skates, first time in an outdoor rink. At first, you can see how terribly turned his little foot is. How he struggles. Then, for a few seconds, you only see him from the waist up. All of a sudden, everything is just right.

Eyes up Mom, even if it is just for a moment. Eyes up and enjoy.

Dig

2010-02-26T10:04:00.003-07:00

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

2010-02-18T22:32:00.002-07:00

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

2010-02-15T15:37:00.009-07:00

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?

2010-02-11T21:22:00.004-07:00

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

2010-02-08T16:50:00.002-07:00

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

2010-02-07T17:31:00.003-07:00

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

2010-02-05T09:47:00.004-07:00

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

2010-02-04T09:41:00.002-07:00

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

2010-02-01T10:37:00.003-07:00

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.