Tuesday, May 29, 2012

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.

Friday, May 25, 2012

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.

Thursday, May 24, 2012

Baseball Season

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

That reminds me, I need more Oxyclean.

Tuesday, May 22, 2012

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.

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!

Wednesday, May 16, 2012

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
Lifting and then turning his foot. 
Walking (front view) trying to walk heel toe.
Walking (side view)
Let me know what you think of his foot as well as when you think he needs to come back.
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.