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.

For Grandpa and Levi

Here is a short video I made of Matthew playing football this season. Matthew 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

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

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

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.