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.

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 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.

Answering Some Questions

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...

Soemthing Magical

I know. I posted that Matthew's appointment with his old p/t (L) did not go well last week. I was concerned that his new p/t (S) was not getting the right stretching, not getting the time in (he does 30 min as opposed to 60 min) that he has never worked with kids and may not have the experience needed. I was worried that we were going to have to try and fit in trips across town over the dinner hour back to L for physio.

Matthew saw S again yesterday. I told him L's thoughts on Matthew's foot. That is didn't seem any looser then when she saw him last (pre-cast) but that she thought his talus was moving better. I showed him the new stretches (mobilizing the talus) she wanted me to do. S said I was doing them right, good, they are harder then ones I have been doing.

After stretching for about 15 min, S said he thought that Matthew's foot wasn't too bad. He compared it to someone with a bad ankle injury. He felt that he wasn't missing that much dorsiflexion. He believes that what we are doing will keep him away from surgery.

He opened up about what he went through. He said was born with severe in-toeing. Said that the doctors told his parents that they would cut the bones of his lower legs, turn the legs out, then reattach them. He was old enough to understand what was said and was terrified. His parents said no way. They sought other ways to fix the problem. They found physio and they found sport. In particular, skiing and skating. Forces the feet to be parallel. He asked if Matthew had ski boots.

I looked out the window. From there, you can see Canada Olympic Park. The night lights had just come on and the snow was sparkling. It is open and they have started lessons. I told him that for the past few years, Matthew's foot has either been operated on, casted or so messed up he has not had the opportunity to try skiing. But this year, we had been talking about it.

S smiled and said "get him in."

There is something about S that just feels right. Maybe it is hope. Maybe it is his positive attitude. Maybe it is the special relationship that is forming. He is young and Matthew thinks he is cool. And he really cares about Matthew. You can just see it. I think he sees himself in Matthew. Perhaps this was the reason he became a p/t in the first place. To help one person like he was helped. And here is Matthew. With a foot that the doctors here want to operate on, and his expertise and experience to stop it.

Some days, it just feels magical. I have no other words to explain it.

This morning, reading the paper, I saw an article about getting the family out in the winter. Talking about skiing. The article talked about how to save money and still ski with your family. Seems that Sunshine Village has some special passes. A child born in 2002 (Matthew) can get a season's pass for $25 (one day lift pass is $27) and a child 5 yrs and under (Ryan) can get a season's pass for $25.

I called Canada Olympic Park. I can have both boys in lessons as soon as this Saturday.

Do you feel the magic?

Christmas in May

I can't believe we got a Christmas present in May.

Matthew was oked for surgery, seems it is just allergies. He has no fever or cough. They took him in and I went to wait in the OR waiting room. About 15 min into it I got a phonecall. THe nurse said Dr Dobbs wanted to speak with me. I thought, oh no. But it was good news. He said that Matthew's dorsiflexion was greater then he could have expected for a week in a cast and he recommended no surgery.

My jaw just about hit the floor.

Dr Dobbs said he would recast him in the OR and then send him to recovery.

After recovery, we got our new appointment for cast removal, brace fitting and p/t for May 18.

Who knew that foot wrapped up in plaster and blue fiberglass held such a wonderful Christmas present.

Scared

I knew this would come. Matthew is now scared of his surgery on Monday. HE holds it together most days well, but usually has a few bouts of tears every evening. He knows we are close to coming home, but that by getting closer to coming home, he is closer to surgery. The last one was so painful and has left him with some rather terrible memories. Hard to convince him otherwise. Besides, I can't lie to him, it will hurt.

As for me, I am ready to go home too. I am getting rather lonely. Tonight at dinner it was all new faces as so many we have gotten to know have gone home. I am craving adult conversation, adult tv shows and a glass of red 'w'. If I know my dear husband, all three will be waiting when we get home in 4 sleeps.

A long day

For the first time ever, I had to drag Matthew out of bed. I woke him up and he said "no, Mommy", rolled over and went back to sleep. Poor kid. Both of us laid awake last night after little sleep the night before and a long day.

We arrived at the hospital at 7:30 am and were called back immediately for forms, wt, ht, x-rays, photos, then into an exam room for more forms.

We were seen by a few nurses before Dr. Dobbs came in. I have to say, what everyone says about him is true. He is a very nice, understanding and knowledgable man.

He asked for Matthew's history then examined his foot. I am too tired to remember how the converstation went so below is what I remember, in no paticular order.

Yes, he is tight and his foot needs to be moved over. Casting and intensive p/t should do that. He may need the tenotomy again, but Dr. Dobbs will wait to see how tight he is after casting. Yes, Matthew is in a full leg cast, red this time. Photos to follow when I return home.

Yes, his extra ankles is the bottom of his talus bone protruding out. There is no new bone being laid down. No damage has been done. After this first cast, it should not be visible any more.

He feels that with this set of casting, possible tenotomy, intensive p/t and a new AFO his foot should hold in position for the long term. Yay!

He is pleased at how much motion his tendon that was transfered has. Yay!

He is willing to work with Matthew's current surgeon if I want. I explained that I may have burned a few bridges there and not sure if we can do that.

He is also willing to work with our p/t and our orthotist.

Even better then this news, Matthew made a friend. His new buddy is 7 and has a right clubfoot that seems to be regressing. They met in the x-ray department and by the time we were having a surgical tour, they were best buddies. They both got casts and are scheduled to be back on the same day for a cast change. I told his mom about haven house. She was very interested, maybe they will stay here together next time. I think this is the first time Matthew has seen another child the same age with the same problem. It was so wonderful to see them together.

So our next few weeks looks like this. This cast stays for 2 weeks. We come back here on Easter Sunday for a cast change Easter Monday. Then we stay for the next 3 weekly cast changes. Dr. Dobbs feels that 4 casts should do it, but that is an estimate. At that point, he may or may not need a tenotomy. If he does, it will mean three weeks in that cast before removal. Then, intensive p/t.

It is 3 pm, we are both tired and hungry. Matthew wants to go back up to the room. It is going to be early dinner then bed for tonight. We have a driver picking us up at 6:15 am for the airport. We have 58 min between flights tomorrow, if we make it we should be home by 1:30 tomorrow. Then I have to arrange everything for our next trip.

Will update with photos when I can.

Unsettled or How Big Is Your Ego Anyways?

If you have been following along on this crazy train, you will remember that on Friday Feb 13 I tried to get in to see Matthew's surgeon to talk to him about seeing Dr Dobbs.

Guess who called my late yesterday afternoon? Yup, only 4 1/2 weeks after trying to speak with him, he called. Seems he just received the referral letter that I wanted to speak with him about seeing Dr Dobbs. He apologized and gave me a number for his secretary so in the future I can get a hold of him a lot sooner.

That concluded the nice part of the conversation. The next thing he said to me was "What hat did you pull this name out of?" It went downhill fast after that.

To summarize the conversation, basically he feels I am searching for a Ponseti trained doctor for a second opinion and that I have gone 'internet shopping' (his exact words). He feels I should have come to him and he could refer me to a better doctor, either the one that he works with (Ummmm, how is it a second opinion if it is your colleague?) or one in Seattle. That Dobbs is good, but not the best.

That was hard to hear. This is the man that I have trusted with my son's problems for six years. To have a professional tell me that I have not found the best doctor was hard to hear. Maybe I didn't look hard enough, maybe I have jumped into this with my eyes closed, maybe I should just make an appointment and have Matthew seen by his doctor again.

Professionals can yield a lot of power over a desperate mother.

The call did end on a somewhat positive note. He told me that if I did seek a second opinion (No, I didn't say we were going, I didn't get much time to talk and I was in a bit of shock) that I should make sure I send his file. I was able to say that I was not unhappy with his current care, but that I wanted to make sure that there wasn't something else out there that could be done. He did say he understood that I need to be Matthew's advocate and that if I need to talk to give him a call.

Sheesh. Talk about feeling unsettled.

Then I spoke with my husband. Funny, I was unsettled and unsure of what to do after the conversation. My husband on the other hand said the conversation left him feeling more sure about what we were doing then ever before. He said that most likely it was ego talking.

I had to go over in my mind the things I am not happy with here.

1. I have been asking for physio for Matthew since 2007. His surgeon keeps telling me to this day that it is unnecessary.
2. His surgeon explained Matthew's surgery to us but never once mentioned the possibility of bone surgery. He did that without us knowing.
3. He doesn't want to see Matthew until June. He seems to be waiting to do more surgery rather then prevent or prolong it.

And then I checked my email. A mom from the US with a son with neuromuscular clubfoot was asking what shoes/AFO's to go with a brace. Here in Canada, I was not given options so unfortunately I was no help. She emailed her son's doctor (Dr Dobbs) and found out he is in Hawaii on vacation. She thought she would have to wait awhile for a response. She didn't. He emailed her back from his vacation with the answer she was looking for. Amazing.

Thank you, that helped me so much. I do believe that this is a great doctor despite what I heard yesterday.

10 days and counting.

Perspective

I can’t believe Matthew is one year post-op today. Here is where you can find out more about his surgery. While we waited for hours in the waiting room, I was visualizing where he would be a year later. It is kind of a bitter sweet day. I had thought that by now the curvature in his foot would be corrected and that he would be able to hold his foot in neutral. And the biggest wish, I had hoped he would have a heel strike when he walked. So, here we are at a year and his foot is still curved, he does not have a heel strike, and he is facing more surgery within the next 6-10 months.

I have to keep reminding myself. His foot will never be normal, but it can be better. If I stop comparing him to regular kids and start comparing him to him, things seem better. Here is what I mean. The following photos were taken a year apart. There is a lot of improvement.

Jan 2008


Jan 2009


See, better. Not normal, but better. Also, you can see where I got the title for this blog in that last pic. His foot is now a good 2 sizes smaller then the other.

Jan 2008 he could not put his foot flat on the ground


Jan 2009 darn close to flat!


Jan 2008


Jan 2009 not much improvement and his calf muscle is even smaller then ever


Now for the best part. He is able to move his foot to neutral and hold it there. Well, not quite neutral. But he can move it upwards and hold it. Something he has never been able to do before.


So, after a year of surgery, botoxing, casting, AFO's, physio, and most importantly running, playing and being a kid, we have success. Matthew teaches me new meaning to that word every day. This journey that we are on is still long but I have no doubt that this little foot will take him where ever he can dream.

In a funk

I'd be lying if I said I was doing better today. I'm not. I am in a real funk. I was hoping that over night I would have some insight and perspective but I don't.

Maybe it is because this massive surgery was less then a yr ago and to find out that it is not working and to hear surgery again makes me second guess everything. Maybe we should have held off on the surgery. Maybe we should have gotten a second opinion. Maybe we should have just botoxed again and waited. My gut feeling on what should be done is gone. I'm lost and feel like I have failed him in many ways.

I just want another adult here with me for a few days. Hubby doesn;t fit that bill. He wouldn;t take time off work, and when he is home, he has his own priorities. I guess he is used to me being able to handle it all. Guess I am going to have to give myself a big kick in the ass and pick myself up. Hubby is off hunting for the weekend, going to need to do it soon.

And what makes things worse is I know deep down that so many have it far worse and I should be happy for what I have. But I can't, which makes me feel so selfish and weak when I need to be strong for him and for our family.

Boy, this comes off as a feel sorry for me post. Not my intent. Just need to get my feelings out, hopefully that can start me on the right path so I can be who I need to be for my family.

Not a good day

Well, today was not the best day.

I picked Matthew up from school and he wanted to stay and play with his friends. I reminded him that we had to see Dr K at the hospital so we had to leave. He got really mad and took his AFO off and threw it on the floor. It cracked in half. No fixing it. It's garbage.

When he looked at me, he was on the verge of tears and so angry but he was holding it together because his friends were standing right there. I know how he was feeling, because I was feeling the same and just holding it together because all of his friend's moms were standing right there.

I got his boots on and we got into the van were both of us broke down crying. It was a rare moment. I usually hold it together with him, but today I couldn't. We sobbed all the way home and when we got home, we all cuddled and Matthew and I cried. He finally was able to tell me that he was so scared and angry because he is worried that he will need another operation. He wanted me to tell him that he would never have any more, but I couldn't because that is not a promise I can keep.

We finally got ourselves together and went to the hospital where we had a rather awful appt. Dr. K is really disappointed at the tightness in Matthew's foot as well as he has 10% equinus back. That means his foot is no longer neutral and can not be brought into neutral. We are fighting massive growth and losing. He debated casting him now but decided not to.

He said that he is hoping we can hold off the next surgery for a yr, but he is not sure it can wait that long. His foot is regressing way to quickly. The good news is the next surgery will not be as invasive as the last. He would only need a minimum of 1 night in the hospital (maybe 2) and he would go home in a walking cast.

Oh, and he needs a new AFO. Not just because he broke his, but because he can;t have it in neutral anymore.

So I am bummed out, Matthew is emotionally spent and I am sure he will be upset for a few more days. And, we have to start the whole AFO fitting process from scratch... again.

I think I need a few days to process this.

Waiting...again

Well, we are off to see Matthew's surgeon this afternoon. I have been waiting rather impatiently for this appt but now that it is almost here, I don;t want to go. I guess I am nervous that he is going to say that perhaps this surgery was not that successful.

I guess it is a good thing that this appt hits at the same time as the Care For Kids Radiothon. It is keeping me grounded by reminding me that regardless of what happens with his foot, he is still healthy, at home, and will live a long successful life. It is as much as I could ask for.

So, anyways, I am making my list of questions for the surgeon.

how successful was the surgery
where do we go now
do we need to start physio (foot turning in, walking on side of foot)
how is the fit of his AFO... ankle placement
foot rub marks/calluses is this a concern
should we be concerned about the bruising around top of AFO
his foot seems so tight is this a concern
can he do ski lessons

So that is it so far. Will have to think some more to see if there are any others.

Will update this afternoon some time.

It's a little bit yucky...but what a difference!

here are some photos. Because he has been casted for 8 weeks, the scabs have not fallen off yet, but the skin underneath is pink and the incisions look great. All of the skin on his foot will peel off within the next few days to a week.

Inside of his foot. This is where they removed the posterior tibial tendon from and where they released (by cutting) all of the muscles in his foot because they were too tight. I'm guessing by it's size, they were also able to remove the part of his heel bone from here too.


Top of his foot where they reattached the posterior tibial tendon. If you look up his leg, you can see the bottom of another incision


Bottom of his foot. You can see the wart just below his toes. It looks like we may loose it soon. You can also see the where the big blister is that I mentioned after his cast change 2 weeks ago. It should come off very soon. Matthew is already picking at it. You can also see one of the incisions on his leg.


And the big difference....

Before


After


His foot is so much straighter already!

Could it be?

ok, I know that I am really wanting to see something. I know that this could be wishful thinking, but, I think, I really truly think, I saw Matthew's toes move upwards ever so slightly.

I will be asking Margo tomorrow if she sees it too.

If he is moving them upwards, it means that the tendon and muscle that they moved over to the top of his foot, is actually working and it could mean in 6 m time, he will actually have upward motion of his foot. And that the surgery was a complete success....all that this poor little kid has been through, will have been so so worth it.

I'm so filled with hope and excitement, I'm not sure if I can sleep tonight.

Back to the OR

We are going back into the OR tomorrow, Friday Feb 1. He is getting a cast change under general anethesetic because it is going to be very painful. He is going to reposition his foot into a walking cast, which means stretching all of the muscles that were cut and moved around. Plus, mucking around with his heal bone that is missing a 5 mm chunk. OUCH.

Luckily, it is just day surgery this time. No overnight stays. He will come home with me as soon as he is able. I will be asking for another script of codeine for him too.

He will be in this cast for 6 weeks. Then his othotist will fit him for a new AFO. He will be casted again while his AFO is being built. Then when it is ready, he will be out of the cast.

We won't know the success of this surgery for 6-9 months. That feels like forever right now.

Surgery

Matthew wore special shoes during the day for a long time and the shoes and bar at night. He learned to walk in them.


Eventually, he was given the ok to stop the shoes and bar, and went into his first AFO. (ankle foot orthotic)

In the spring of 2007, his foot was turning again. He was botoxed and serial casted for 8 weeks. He did everything in those casts from camping to soccor to wall climbing. NOTHING slows this kid down.


His heel cord was better, but still tight. He was growing... a lot.

In Sept, his surgeon decided that he needed some surgical intervention to correct his foot. We agreed.

Before surgery pics You can see how the upper foot has turned inward

Here he is standing on his foot. He was no longer able to be flat on the ground. from the back you can see how his ankle and foot are no longer shaped correctly. The calcaneal osteotomy should fix that.


Compare his foot to this one bcfootandankle.com/osteotomy.htm makes me excited to just think about what his foot will look like after all this is done!

So, on Jan 22/08, my little 5 yr old went in and after 3 1/2 hours of surgery had a posterior medial release (all the muscles in his foot were tight) a tibial tendon transfer (moved the tendon and muscle to try to get some upward motion of the foot) a calcaneal osteotomy (removal of 5 mm of his heal bone) and some more botoxing.

He was in a lot of pain in the hospital. He was on 3 ml's of morphine per hour plus he was getting morphine boluses whenever he needed them. (12 ml's of morphine within 10 min) He came home on Friday Jan 25 on codeine and tylenol.

They split his cast immediately after putting it on to make room for all of the swelling. Trust me, it was needed. Poor kids skin was so tight I thought it would burst.