Holiday Plans Out Of My Control

Summer holidays are finally here!  We have a very busy summer planned.  Started on June 29, heading out to Rowley Alberta for the ghost town atmosphere and a famous pizza night!  Then, on to Saskatchewan to visit family.

First stop...

Or just Rowley!

Rowley is a ghost town except for the last Saturday of each month when everyone comes out for pizza night.

I swear getting adults to look at the camera is harder then getting kids too!

The best part of a ghost town?  Playing on the playground equipment that has been banned everywhere else!  Ryan loved this thing!

It was a wonderful weekend spent with family celebrating Canada Day.  Even a little drizzle did nothing to dampen these campers spirits!

No matter how hard you plan, something always gets in the way.  This time, it was a large rock thrown from a fuel truck on the highway.

After we stopped the truck, realized what had happened and shook the glass off of everything, we realized it was best to turn around and head home rather then drive another 14 hours with a baseball sized smash in the front windshield (almost a hole, it was soft to the touch). 

Now, back home with a new windshield, we are ready to start back to our summer.  With a new trip home squeaked in.

Allard USA

Where will this little foot take him? 

 I remember when I named this blog.  I thought it was appropriate.  I had no idea just how appropriate.

I was contacted a few weeks ago by a woman at Allard USA who pointed out a blog by an inspirational woman by the name of Beth Deloria who suffered drop foot after scary back surgery.  The people at Allard were able to custom make her a ToeOFF brace which allowed her to get back to running marathons! 

So I emailed the woman at Allard thanking her and asking if Allard could do anything for Matthew.

Thank you so much for directing me to Beth Deloria's blog.  I am inspired by her dedication.  I am also very interested in her toe off brace. 

My son Matthew has a very unique combitation of foot problems.  His current specialist is Dr. Dobbs in St. Louis, MO even though we reside in Calgary, Alberta, Canada.  Of the kids that Dr. Dobbs sees, there are only a few that have drop foot in combination with clubfoot.  Of those, I only know of one who is using a Kiddie Gait toe off brace and he is only 4 yrs old.  We looked into a toe off brace, but were concerned with his ankle pushing out (supination) and pushing into a toe off brace.  That said, his foot seems to be stablizing and has not shown signs of supination in over a year.

Are there any Canadian companies, in particular Albertan companies willing to take on making a toe off brace for Matthew?  We are always looking for something better for him.  Something that would allow for calf development, and less restrictions as his tendon transfer strengthens and allows for more motion.

Again, thankyou for contacting me.  It never ceases to amaze me how Matthew's little foot touches people from around the world.

 You never know right?  Well, a few days later, this was the response I got from her.

Hi Jo-Ann,

I just want to let you know we are checking into this for you and I will get back to you as soon as I have more information!

Awesome right!

Then, I asked Beth Deloria if I could get some photos of her brace.  Just to get a look up close.  This was her response.

Hi Jo-Ann. Yes, I will take some photos and post for you tomorrow. I'm not sure how supinated your son's foot is but I do know there are corrective measures (custom inserts and even custom-ToeOFF's) that can be made in many cases. I am not the expert to speak with, just an expert in my own experience with many different braces. :-) I know first hand how painful blisters and hotspots are with AFOs and I can't imagine my life without the ToeOFF now. I truly hope the Allard experts can find a solution for you! I was told that Allard HQ is looking into it also so hopefully you'll get the answers soon. In the meantime, other than posting the brace photos, please feel free to use my email  and let me know what else I may be able to help with. Fingers crossed for you and your son! -Beth 

How cool is that?   Seriously!

So again, I ask myself, where will this little foot take him?  The possibilities are endless!

We are headed out of town for a few days, but I will update when I can!

Even With All The Rain

My garden is growing!  I thought it would need more sun, but so far so good!

Finally Flowers!

Finally I found a day that I had time and it wasn't raining to plant some flowers!

I am sucker for Dahlias.

Apparently I am not the only one.

Isn't this verbena pretty?

My Mother's Day parsley still needs to go outside.

Looking forward to Mojitos this summer with fresh mint!

Can't believe the radishes are almost ready!

Looking forward to some sunshine and some HEAT!

Picture of a Pitcher

Matthew got to pitch his first inning this week in little league (They only pitch one inning a game).  He did a great job!  First batter got on after two strikes.  Next three batters were struck out!

  Check it out here.

Not bad for a kid with clubfoot, nerve damage, numerous surgeries, leg length discrepancy and an AFO.

Coach says Matthew will be pitching in every game for the rest of the season! 

Mama's Got A New Pair Of Shoes!... Wait, That's Not Right

Check it out!

 

Yup, shoes fits... but I am not going to be wearing it.  This is Matthew's newest sandal complete with lift courtesy of my man Tony.

When did this kid grow so fast?

An Overdue Update

I realized that last year's posts were filled with sick kid updates.  Thought I would update.

Matthew saw an ENT in September.  I knew his tonsils needed to go but had heard that most doctors these days do not want to remove them.  I was ready for the battle with a list of illnesses and medications.  The doctor took one look at Matthew's tonsils and said "how does Dec 6 work for you?"  No argument, no battle.  Only a compassionate doctor.

So, in December, Matthew had his tonsils and adenoids removed.  It was a tough few weeks, but since then he has been healthier then he has been in 18 months.  Best decision ever.  Even Ryan has been healthier.

Some days I think as a parent you need to have a medical degree.  For years, Matthew has not been able to fly well.  His ears NEVER equalize while flying.  I've tried everything.  Gum, drinks, medication.  Nothing works.  Until now.  Adenoid removal.  Now his ears are clear flying.  Turns out, if you research adenoids, when swollen, they block the Eustachian tube and you can not clear them for flying.

If only I had know.  All those flights to St. Louis. 

Poor kid.

But that is the past.  As always, we look forward.  No sense in looking back.

Another Day, Another Toe Strap

I know I wasn't blogging but believe me, this happened about 2 or 3 months ago.

Another blown toe strap.  I like it when we blow an ankle strap.  I have a bunch of those in my drawer.  Just remove the old one, replace with the new one.  Problem with the toe strap is it needed more anchoring then the other straps.  It is anchored with two rivets.  Why?  Because of this.  When we blow a toe strap, it means I need to take it to the orthotist, leave it a day, then go and get it again.

Yet another reason why I am so thankful I am not working.  Guess where I am going tomorrow.

The Shoe Never Lies

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

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

 Here is another view.

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

 Funny how an old shoe can bring such joy.

Baseball Season

How do you know when it is baseball season?  Just look in the laundry basket!

That reminds me, I need more Oxyclean.

A New-ish Kind Of Surgery

I was told about Dr. Susan Mackinnon from Washington University in St. Louis and her nerve work, last year from another Mom of another neuro clubfooter.  It sounded fascinating and that Mom was going to try and get her son in to see her.  Long story short, it didn't work out.

Anyways, this is the reason why we were very excited to hear about Dr. Susan Mackinnon and her close proximity to Dr. Dobbs.

Nerve transfer operation restores hand function for paralyzed patient

 

Surgeons in St. Louis, Missouri, have restored hand function to a 71-year-old paralyzed man — the first reported reactivation of muscles in thumb and forefingers after a spinal-cord injury — thanks to a new operation called a nerve transfer.

You can read the whole article here.

http://www.medicaldaily.com/news/20120515/9890/nerve-transfer-rewiring-paralyzed-hand-quadriplegia.htm

It is fascinating and amazing and really so very simple.  I think this could be too late for Matthew as he has already had the tendon transfer, but for other kids coming up this could be a breakthrough for them.

I would also interested to hear if Dr. Dobbs has any thoughts on this. 

I know it made my day just thinking about the possibilities!  What a breakthrough!

A Really Good Update

Onto an update.  A Really good update.  Which, after almost a year since the last time seeing Dr. Dobbs, is really remarkable.

The following is the email I sent to Dr.  Dobbs and Kristina Porter.

Hi Dr. Dobbs and Kristina Porter,

It has been quite awhile since Matthew has been in to see you.  I believe his last appointment was June 29, 2011.  Right now, his foot is looking really good and was not sure when I should bring him down again.  Although I love to come down and see everyone and hear that his foot is great, it is a long expensive trip to find out all is well.  If it is possible, I would love to send photos and video and have you let me know if you think there is a problem and if he needs to come in.

Anyways, here is what he is doing right now.

The shoes that he wears the majority of the time have a lift in the left shoe.

He wears his AFO at school Monday to Friday, but doesn't wear it all the time on the weekends.  We do E-stim at home a few times a week as well as I try to stretch him at home.

He does physio once a week, where he gets their stronger E-stim machine, stretching and kinesio taping that I leave on for about 3 days.

We are working on getting him to walk heel toe rather then toe heel (out of his AFO).  It comes out as a flat foot hitting the ground rather then a true heel strike.

He can lift his foot to neutral, and I can stretch it to maybe 5 degrees above.  I think his physiotherapist can get it higher.  I can check with him for you.

He is still getting more lateral motion.

I am noticing the front of his foot is turning in a bit, but his talus is still in proper position.

I am sending along photos and a few links to video of him moving his foot and walking if that can help with your assessment.  If you need more angles (or better ones) please let me know.

Lifting his foot as high as he can

http://www.youtube.com/watch?v=vqdbZz_UrPM&feature=youtu.be

Lifting and then turning his foot. 

http://www.youtube.com/watch?v=q6ry-aa_D1Y&feature=youtu.be

Walking (front view) trying to walk heel toe.

http://www.youtube.com/watch?v=No1_s90y2y4&feature=youtu.be

Walking (side view)

http://www.youtube.com/watch?v=MD6NRNx-dzE&feature=youtu.be

Let me know what you think of his foot as well as when you think he needs to come back.

Thanks

I received great news after that email.   Dr. Dobbs was impressed by his foot and feels that he doesn't need to go back this June.  In fact, he said this

I think Matthew looks great; you can hold off in coming back at this time.  Following with video is very useful.  He has made good progress.  How does he tolerate the e-stim at this time?  Has he had an MRI of both legs done at some point?

We can post-pone follow-up for another year.  Just keep me posted as to his progress.

All the best,

Matthew Dobbs, MD

Another YEAR?!?!  To me, those are words I thought I would NEVER hear!  

Now the doubting Thomas in me says that we can hold off for now, but will most likely be back in the fall.  But for now, those have been the best words I have heard about his foot in... well.... forever.   I let Matthew read the email and he did a jump and shout "yay".  Even he realizes how great that news is.

 So for now, we are on the high of good news.  And on to baseball season.  Matthew just may pitch this year.   More on that later.  For now, we need to savior and celebrate.

Hello Little Blog

Hello Little Blog,

I have missed you.  You have never been far from my thoughts.  So many times I have thought of coming here, writing, but circumstances have kept me away.  I hope you can forgive me.  Understand that I have gone through some difficult times.  Have grown, shrunk and as always, grown again.

I see that you are still having visitors from all over.  Every day.  I am as always, amazed at your popularity.  Part of the reason I feel the need to come back, to update, to keep others up on what we do.  All in the hopes that out there, somewhere, are Matthew and I, 9 years previous.  Struggling to find out what to do next.  Desperate to find someone who has the same.  Hoping for good news.  Looking for guidance.

I hope that this time, I am able to keep coming, keep updating, keep the good news coming.

So onward, as always, we go.