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!

E-Stim Update (7 months in)

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!

Meet Me In St. Louis

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.

A Cautious Foot Update

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.

Better Late Then Never

Five years ago I had a lot of questions. I wondered what Matthew's life would be like. I wondered how his little foot would impede him, where it would take him, if it would even change his life. We had so many questions, so few answers.

Now, I have met a mom online who has a little boy who is almost two who has a neuromuscular clubfoot like Matthew. She has many questions as to what her son will be able to do and so few answers.

With so few kids with the unique problem of clubfoot and nerve damage, it is hard to know what will be, but today, I can give her one answer. See, she and her family love to snowboard and have been wondering if her son will be able to enjoy the sport as they do. We also wondered about skiing with Matthew.

Here is what happened yesterday at Canada Olympic Park. Finally, for the first ski season, Matthew was not in a cast, not awaiting surgery, and the bones in his foot were perfectly aligned so he could use it pain free. So, I signed them up for their first ski lesson.


Matthew caught on quick, Ryan took a bit longer but they are both hooked and want to go back.



And the absolute best part...

Despite the rental boots being rear entry, I was able (with some finesse and some force) get his AFO into the boot AND it felt comfortable!

After their lesson and their begging for one more run (even though the temperature was -18 C/-0.4 F) we celebrated with a hotdog and fries. I asked what they thought of skiing. This says it all.


Where will this little foot take him? As of yesterday, to the ski hill. And tomorrow is full of possibilities.

Conversations with a 6 year old

We had an amazing conversation while driving to school today.

"Mommy, is there a bone in your tongue?"

"No Matthew, your tongue is all muscle"

"How can it move without a bone?"

"Muscles are what make your bones move"

"So if you can't walk, does that mean you have no muscles?"

"No, it means that something is wrong with the muscles. They are still there but they aren't working properly"

"How do they work?"

How perfect can this conversation be? How timely?

"Your brain is the boss of your body. It sends a message to your muscles to move. That message travels on a road called a nerve. If there is something wrong with the nerve or the road, the message can't get there"

"And then you can't move your muscle?"

"yes Matthew. It is like your foot. The nerve to your foot has some problems so the messages from your brain have a hard time getting there"

It was quiet back in the van. Matthew was thinking.

"So Mommy... that is why I can't wiggle my toes. And that is why I can't move my foot like this."

"yes Matthew. But does it slow you down?"

"No Mommy."

"Ever?"

"Never"

I think he is ready to be told about St Louis. Wish me luck.

Amazing

I can not believe it. In fact, I am still at a loss for words.

Last night, just 24 hours after joining a clubfoot group and introducing myself, I was contacted by someone who also has a son who has clubfoot with nerve damage.

This is the first time I have ever talked with another parent who has the exact same problem as Matthew. I felt like I was reading our own story when she talked about her son having a Nerve Conduction Test to confirm the nerve damage and an MRI of the spine to rule out tethered cord.

She told me that she knows of 8 other families in the US that have this unique problem and is inviting me to chat with some of them. Honestly. Speechless.

And the best news yet. She gave me the contact information for a doctor in the US who has dealt with this unique combination.

I will be composing an email and sending it off in the next few days.

I have not been so excited to contact a doctor in a long time!