The Talk

We have had the talk a few times over the years. But it was needed again.

"Matthew. You know we are heading to St. Louis in 10 days."

"Yeah"

"Matthew, there is a good chance you will be in a cast again."

"I know Mommy. It's OK. Casts are no big deal."

"But Mommy...make sure you pack my crutches this time."

"Ok Matthew. I will make sure."

The ease and wisdom of a 7 year old scares me sometimes.

Trying Something New

Matthew had physio today. I told Steve that I was sure that Matthew's talus was protruding again. I even brought the pictures from last year to compare. He agreed, it had to be the talus.

I told him this is the pattern. His foot starts to supinate, the talus comes out, dorsiflexion decreases and it goes down hill from there.

Steve feels his dorsiflexion is still really good right now but after some thought asked if we could try taping to keep his foot pronated and keep his talus in proper position.

So, here we go... taping.

Btw, the green was added by Steve, seeing it is Matthew's favorite color.


This taping stays on for 2-3 days, then we go back in for a change of tape. We are going to try to keep this up until we go to St. Louis in 12 days. See what Dr. Dobbs thinks about it.

I'm not convinced this is will help, but it can't hurt. And right now, I am game for anything.

Sometimes You Have To Look Back To See Forward

Two years ago (plus a few days) Matthew had his posterior tibial tendon transfer, calcanial osteotomy, medial release, and some botoxing. This time last year, I was devastated after his surgeon decided Matthew needed more surgery. His foot looked terrible.

I started searching for another option and found first a very large clubfoot group (2600 members), second, a small neuromuscular clubfoot group (now 11 members) , and then Dr Dobbs.

This past year we went from thinking Matthew needed more surgery to correcting his foot through proper castings. I was quite upset thinking Matthew will need yet another cast when we go in two weeks, but looking back, I see we have come so far.

Just not far enough yet.

Here are some comparison pictures.

Jan 21/2008 the night before sugery


March 18/2008 after the casts came off


Jan 22/2009 One year post op


May 18/2009 after 7 weeks of casting with Dr Dobbs


Jan 25/2010 two years post op, signs of regression again.


And for his talus bone, I am convinced we are seeing it again. His foot is supinated

his talus pops out. It is not as bad as it was last year, but it is there.

Talus bone last year.


And talus today. Not the best picture (Matthew was not cooperative this morning) but you can see it.


So now you can see what I am seeing. I am convinced a casting will happen. Now, to let Matthew know what is in store. He will not be happy.

And one last shot for Michelle from Xandibby and Co. who was asking about stretches.

I do stretch Matthew in his AFO by pushing his foot upwards when his AFO is on. This is the other stretch that I do. By the way, Matthew was really uncooperative this morning and was hiding beside the couch. Oh well, just need the foot for stretching.

I was told to make sure I use my thumbs on his heel and push it down as I push his foot up. That way his talus is in the proper position for stretching. Also, I try hard not to push the middle of his foot. Before I was told I was causing a mid foot break by doing that. Hope that makes sense.

Kristina Rocks!

Kristina called me this morning. Yay! Seems that I got it mixed up, that it was her that sent the email. She just didn't sign it and that she isn't Dr. Dobbs Nurse Practitioner, she is his nurse co-coordinator. It is true however, that he is swamped and does not have time to see all patients at Shriner's anymore. If things are looking good, he will not have the time to look. If, however, things are looking like there will be a need for casting or surgery, he will take a look. But because he will be back and forth from the OR, there could be a wait.

So, I suppose at some point, when Matthew's foot stabilizes, maybe we will start to see someone closer and only head back to St. Louis if there is a problem. I am trying to use the word 'when' and not 'if'. I am still clinging to the hope that at some point in the future, his foot will remain corrected and castings will be a thing of the past. Hard to do right now when we are seven years into this and I see a cast in the near future.

Last night, I was reading through my blog and found a comment from Dr. Dobbs about Matthew's talus that I had forgotten. During a cast change I had asked about his talus. His talus is still noticeable and Dr Dobbs admitted that it may always be prominant. Guess that makes me feel a bit better about seeing it again. I still think it means we are in for another cast when we go in two weeks.

I've decided. I am packing the crutches.

Paranoia Setting In

A few weeks ago, the strap on Matthew's brace broke, again. Luckily, this time, the orthotist in St. Louis gave us an extra strap just in case. I got it out and put it on.

About an hour later, Matthew went to put on his brace. I, being a lefty, put the strap on the wrong side. Instead of doing up on the inside of the ankle, it now does up on the outside. And after being on for an hour, I worried if I removed it, it would not stick. I had a moment of panic. What if the strap pulls his foot in instead of stretching it out! I looked and analyzed and decided because it crosses over under the foot, it shouldn't matter which way other then ease of putting it on.

So I left it...but asked Steve the next day when we saw him. He agreed with me.

So, here we are, a few weeks later and paranoia is setting in. I think his foot is getting tight again. And, I am noticing extra bumps again. Just like last year when his talus bone started sticking out. The bumps are small but in the same location.

I told Steve that I thought his foot was tighter. And then I asked about the lumps and bumps. He was quiet, manipulating Matthew's foot. Then, he turned to me and said "now you have me paranoid!" After a few minutes, he said he didn't think it was the talus. That it felt too high up. And that he felt Matthew's foot was still loose, but that he was fighting the stretching harder then usual.

I am not so sure. We've been down this road too many times to dismiss this so easily. Now I am worried that I messed up the strap. I am also worried that we won't be able to see Dr. Dobbs himself. I am starting to feel we are heading back to square one.

Again.

By the way, I called Kristina's direct line and left her a voice mail. Hopefully she can contact me and let me know what is up.

Trickle Down Effect

I have tried numerous times over a year to have Matthew's Nerve Conduction Test (done here in Calgary) sent to Dr. Dobbs in St. Louis. The last time, I was sure it had been sent, but when we were there in October, I found out it still was not there.

So I sent an email to Kristina, Dr. Dobbs nurse practitioner, right hand man, overall wonderful person. Asking her to personally request the test results so I can get a copy to compare with another mom.

I was shocked to get an email back NOT from Kristina, even though I sent it to Kristina's account, but from some one else who did not sign the email. So, mysterious, unnamed person responded

Jo-Ann
I called and requested it today. I will let you know if I get it. . FYI.... After the death of Dr Ponseti and due to our high patient volume here at Shriner's as of January 1,2010. Dr Dobbs is seeing less patients. He usually sees initials, serial casts and pre-op surgical patients between going in and out of surgery. Most of our clubfoot patients are seen by the Nurse practioner and myself.

So if you are coming to Shriner's you may not see him. He does see all his patients at St Louis Children's. I will have him review the nerve conduction and email you, but I don't think there is time on a Monday at Shriner's to discuss this. He prefers involved and out of state patients see him at Children's where he can spend time with them. I just didn't want you to get your hopes up that you will see him. If Matthew is doing well with no signs of reoccurance our protocol is for him to see the nurse practioner at Shriner's.

Oh.

I know.

Dr. Ponseti's death had a huge impact on the clubfoot community. After all, he was THE man himself. The father of clubfoot correction, for the world. I myself am honored that he himself responded to an email I sent him back in early 2003. But I never expected this. I never thought it would be possible that we would not be able to see Dr. Dobbs.


If things were different. If Matthew's foot looked fine. If we were just getting a check up, I would be fine with this. But this is one of those involved patients. And for us to see him at the Children's means we would have to either have to pay out of pocket or get funding from our health care. Which means Matthew's old surgeon would need to write a letter saying that he has done all he can and that Dr. Dobbs is THE doctor for Matthew. And after that infamous phone call there is no way that is happening.

I sent an email back saying that we are from Canada and with the differences in health care, it would be very difficult to see him at the Children's and that Matthew usually ends up casted, does that mean we would see Dobbs?

Mysterious person answering Kristina's emails has not emailed me back...

So. I am at a loss. Not sure what to think or to do. If we are not going to see Dr. Dobbs, this is a very long trip to see mystery person.

I just want to be able to ask Kristina what's up. But with mystery person answering her emails, I may have to email Dr. Dobbs himself to see if he can shed some more light on this.

Feeling very unsettled.

Magic and Wonder

I have an 8 by 10 photo of the boys sitting on Santa's knee that I keep up year round.

The picture isn't great. Just one of those department store photos. The boy's have messy hair, terrible smiles. There were no retakes, no special lenses or multiple poses to choose from. And yet, I display it prominently in my house, changing it yearly.

Why? Because of what it represents to me. Magic. The magic and wonder of childhood.

Matthew is now 7 and Ryan will be 6 very soon. Everything they do and see is full of energy and enthusiasm that is absolutely contagious. Whether it is playing in the snow, digging in the sandbox, going for a hike or seeing Santa at the mall, they see the world as a magical wonderland.

We only have a few more years of this pure magic before it is gone. We get so caught up in getting chores done, getting schoolwork done, running errands. We have to remember to stop and enjoy the magic and wonder of the world.

To me, that photo is my window to that magic, even if it is just a glimpse.

Someday

Someday.

I keep saying that to myself these days.

Someday Matthew will be done with casting.
Someday Matthew will be pain free.
Someday Matthew will be done with physio.
Someday Matthew will be able to buy regular shoes.
Someday Matthew will be able to play all sports without struggling with footwear.

Someday. But not right now.

Last night, I was stretching Matthew's foot. He sucked in his breath and said "Good one Mommy!"

I asked him what made a stretch a good one.

His reply, "You made it hurt like Steve does."

Someday Matthew won't cringe when I ask for his little foot to stretch.
Someday I won't have to hurt him for his own good.

Someday. But not right now.

Four Weeks Today

Matthew's next appointment with Dr Dobbs in St Louis is four weeks today, Feb 8.

I have mixed emotions. First, I am hopeful that this time, finally, he will not need a cast. I am hoping that the lift on his shoe is doing it's job. That it is finally holding the correction. And, then, I worry that I am placing so much hope on a half inch piece of rubber. Seems that since seeing Dr Dobbs in October I have been holding his words too close. He said that at some point, Matthew will no longer need casts. Gosh, I know for the normal person, that statement seems silly. Of course at some point there will be no more casts. But after 7 years of this, I truly am no longer able to see the forest for the trees.

I am trying to decide if I should bring Matthew's crutches (yes, he owns his own crutches. Getting crutches for a young child is near impossible). Normally, I would think, yeah, grab them. Can't hurt. But now, with the new travel restrictions I worry that traveling with hollow metal tubes that are crutches will only slow us down and cause havoc. But, to have them if he is casted makes our lives so much easier as we change planes in airports. (they are supposed to keep all weight off of the cast for at least 24 hours to let the plaster cure)

And then there is the whole issue of travel restrictions. How can I travel from 7 am til 5 pm with a 7 yr old with only a small purse to carry things on? And, I have not owned a purse in over 20 years. Where do I even buy one? Days like this I want the chance to line up and kick Umar Farouk Abdulmutallab in the butt for making airline travel that much more difficult.

Forget Love Is Blind

They say love is blind and yes, I do believe that. My husband and I have been married for over 16 years now. Without being blind to some things, we would not have stayed together for so long. And I mean that in a good way AND that it goes both ways.

But, after 16 years, I am ready for one more thing.

My husband snores. Not terribly, but he snores. And it is loudest when he first falls asleep.

And he has the most amazing ability to fall asleep 8 minutes after his head hits the pillow.

I am a recovering insomniac. I have trouble falling asleep and staying asleep. My brain just never shuts down. So, I lay awake for an hour, or two or more listening to him snore, trying to fall asleep. I jiggle him, tickle his feet, tap his shoulder, all those things to try and get him to stop snoring. It helps for about a minute, but he also has the ability to snore on his back or his side.

Last night, I tried some lavender soaked stones beside my bed. They are supposed to help you fall asleep sooner. I thought maybe, just maybe I can fall asleep first, or at least sooner.

They worked. My husband was asleep in a record 4 minutes. AND he must have been in a deep sleep, he snored louder then ever. After 15 min, I tapped his shoulder.

"Was I snoring? Already?"

"yes"

"That can't be, I was just thinking"

And off to sleep he went, snoring all the way.

So, after 16 years of marriage, I have enjoyed love being blind, but now I am ready for love to be deaf.

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.