Annual Check-in with Dr. Nelson

Waiting to be seen... getting some math work done.

We had our first "annual" check-in with Dr. Nelson this morning.
I'll never forget last year when he said, "Looks great! Ok, we'll see you next year."
Next year?! Wow, I guess it IS looking great.
And my, how that year has flown by.
We're a little less than 2 months away from the 2 year anniversary of surgery day (the day the Taylor Spatial Frame was put on and the stretching/straightening began)... and Josiah IS doing great.

At the appointment today, Dr. Nelson (friendly and lovely as always) watched Josiah walk a little, handled his foot (checking the mobility, etc) and then said, "Wow, that foot is looking good. Let me take a few pictures) :)  Praise the Lord! I mean, I was happy with it, but to hear him feel the same, it made my heart happy. (ie. It was all worth it).

Then we discussed the right foot. Long story short, Dr. Nelson is not worried about it. He showed me that Josiah can get his heel relatively flat, and so he is not putting all his weight on the outside of his foot as I figured. It is turned some, so he doesn't necessarily "roll off" his big toe when he walks/runs, (he pushes more off the little toes) but he's not walking entirely on the outside of his foot.  In Dr. Nelson's opinion, it's  not bad enough to warrant pain & challenges of the fixator frame or even the triple arthrodesis surgery later (unless it starts to cause him problems).

Josiah & I  were relieved to hear this... No surgery necessary now or in the future unless something changes.

Dr. Nelson explained that while cosmetically speaking, we could change the foot's appearance with the fixator, it would not significantly improve functionality. He said, "If he were my son, I'd leave it alone." So we will! :)

My boy can run, jump, climb and play. Can't ask for more than that. Glory to God.

Whoops, I forgot to update! 1 year & 5 months later...

It's been 1 year and 5 months since Josiah had his cast removed after the Taylor-Spatial-Frame procedure.  June 21 will be 2 years from beginning the process.
He is running, jumping, and playing with no problems, praise God!
Here he is running to first base after a base hit on Saturday:

His foot is still pretty straight, as you can see in the pics below, especially when compared with the uncorrected right foot.
He never complains of pain with his left foot. It's usually the right he'll complain about in certain shoes (because its shape) and when we're walking long distances, he'll sometimes say his feet are sore.
He is slower than other kids his age, but I think that is due to the typical underdeveloped calf muscles of clubfeet kids and the flat joints in his feet that limit dorsiflexion.
We are happy with the results thus far from the TSF... and it seems like a distant memory even while his scars remind us daily of what he's been through.

We will see Dr. Nelson on April 29th, and I am looking forward to the appointment, both to show him how well he's doing, and to ask him about that right foot again. The way he walks on it... how he bears weight on it... I'm worried that it will cause ankle, knee, and hip pain in the future since he puts all the weight on the outside of his foot.
Before, we had discussed doing the TSF on it sometime in the near future, or waiting until Josiah is closer to an adult to do a Triple Arthrodesis. This more invasive operation fuses 3 of his foot bones together to stop it from turning in. The question remains--- what would be better? To endure the 6 month TSF process again, along with all it's difficulties, or wait until he's grown and do the more invasive surgery that will limit his flexibility even more?
I'm leaning toward the TSF just because it doesn't involve cutting tendons, cutting or fusing bones, and not even cutting open the body at all. Of course, it's "pierced" with the pins of the TSF, but it's still a more gentle fix than the arthrodesis.

Prayers for discernment are appreciated. :)

2 months post-cast

On Saturday the 14th, we'll be 2 months without the cast.
Josiah's mobility continues to improve.
He still likes to turn the foot/leg out to walk instead of heel-toe walking.
However, he is starting to run around on it, which is encouraging.

I think he's coming along nicely.

The foot has lost some of it's over-correction, which we expected; now we just pray it doesn't turn in again.

1 month follow up with Dr. Nelson

Here we are a month post-cast removal, and things have improved significantly. He is now walking on his own without a walker.. and he's not crawling around the house anymore.
His foot is still pretty stiff and he is more comfortable turning his foot and leg out to the left to hobble on it instead of pointing it straight to "heel-toe" it....
We saw Dr. Nelson today and he is not worried about that. He thinks it will come with time. He is pleased to see it so over corrected that Josiah likes to walk with it pointing out. This is because he knows it will eventually start to turn in and then, hopefully, be right where it should be.
We discussed the right foot today, and he is thinking that it does not need to go through the TSF operation, at least not anytime soon. He is thinking that when Josiah is a teenager, he can have an operation on it if it continues to turn or he starts walking more on the outside of it like he was on the left. We've been doing physical therapy for 2 weeks, and have 2 weeks left. We could continue it, but it's expensive for us ($60/week) and Dr. Nelson said that we could just work with him at home. He said that, really, the best thing for Josiah would be to take him to the park and let him play on it. PT is all about gaining flexibility & strength, so play is the best medicine.

We'll return to see Dr. Nelson in 3 months. Prayerfully, by then, Josiah will be running.

3 weeks post-cast

It's been 3 weeks since Josiah's cast came off.
The fixator seems like a distant memory, and when I look at pictures, it's shocking all over again.

I knew his foot would be stiff, but I didn't realize just how hard it would be for him to get around.

It's going to be a long road to full recovery; I wonder how long it will be before he can walk and run freely, without thinking, as he did before... will he ever get there?

Another fixator patient I'm in contact with, who had his frame off in May, is still not back to where he was before and his mother told me she was disappointed to see how much "memory" the clubfoot had (which I interpret to mean that it's pulling in already).

Hearing that and seeing him struggle to just walk a short distance makes me worry that all this will have all been in vain, or my biggest fear, that we've made him worse.

His foot looks so much better than the right... but it's not as functional.

He's started physical therapy yesterday. It was not painful, but difficult (and he got frustrated easily). He'll go 3x a week for at least 4 weeks. That's at least 2.5 hours on Mon.,Wed. & Fri. for which I need to find a babysitter or someone to take him. I know I'll figure it out... it's just I feel like I'm imposing on other people's time... losing my own grading/prep time.

Lots to pray for.

Thank God that Josiah's personality-- his sweet, God-loving, funny, carefree attitude-- is still intact. His faith has grown through all this, and for that alone, it's been worth it. I know that God has a plan in all this, and I can't help but believe that it'll be related to Josiah's ministry as an adult.

We made it!

5 months.
22 weeks.
153 days.
June 21-November 14.

What a journey we've been on the last 5 months, (well, 6 years, really).
Though we're not done yet, we are blessed to be where we are today.

Josiah got his cast removed this morning.
Here's the last "cast shot"
He's happy that he won't have to use this Aqua Sock anymore (which is super cool by the way! You put it on, pump the air out of it, and it creates a water-tight seal enabling the cast-wearer to completely submerge the cast under water! Buy them here: http://www.ithacasports.com/wacaco1.html)

He had been getting around on the cast better and better.
I meant to post about this, but forgot.
For the first 3 weeks, he only walked using his walker. He was so stubborn! I knew he didn't need it, but it was a mental thing.
Here he is even using it on the playground!
He put it up there, climbed up, and then pushed it down the slide so it'd be waiting for him at the bottom. (I refused to help him... tough love... trying to get him to go without it).
After Dr. Nelson questioned Josiah about why he was still using the walker, Josiah decided he didn't need it after all. :) Lol...
He began to nearly run around the house without the walker, and was stoked to discover he could ride a Big Wheel at my moms. (He could have ridden his actual bike, but it was flat).


Here is Josiah with Dr. Nelson (our hero!)
He had literally just returned from Haiti (the night before). This is Dr. Nelson's blog (where he describes what he's up to over there). It is heart-warming and heart-wrenching at the same time. I can't imagine all he sees and experiences there. I wish I could help somehow. How blessed we are to be living in the states! My heart goes out to those living in such dire conditions and I thank God for Dr. Nelson, and others like him, who give of their talent, time, and resources, sacrificing their own comfort, health, and family-time to serve others so selflessly.
May God bless them abundantly!

We didn't have to wait very long to be seen today. I know better now & got the 1st appointment of the day... it just gets busier & busier there.
Josiah yelled a bit when they cut the cast off. He was really scared that it was going to hurt him, but it didn't and it was over quickly. He was not able to walk on it, so I had to carry him out of there (gonna break my back!).

Here it is in all its filthy, stinky, stiff glory:


BEFORE:

AFTER:


You can see how much the inside of the left foot has been stretched out to the left (right side of picture)... It's SO straight! If you compare the left to his right foot (left in picture) you can see the curve on the inside of the R foot. It's not severe, anymore, by any stretch of the imagination, but can see the difference between the corrected & uncorrected now.

What's "funny" to me is that when "relaxed" right now, his right foot falls in and his left foot falls out. They used to point towards each other.

The left foot is currently "over corrected," which is what we want. Clubfoot tendons want to tighten up and pull the foot back in (always)... so they over-correct to fight against that.
It won't stay that way, but the goal is to get it straight, and maintain the stretch as best we can.


Here he is in his first "normal" bath in many months (with Ava who "had" to join in)

Clean (wrinkly) feet & legs!






He is ecstatic to be done with the fixator & cast, but realizes that it's going to take time & effort to get his foot functioning again. It is super stiff and very tender.
Praise the Lord for his faithfulness to us these past 5 months, and praise God for Dr. Nelson & his team!

Next up... PHYSICAL THERAPY!

Almost done!

In 10 days Josiah will get his cast off!

He has not had to change it since it was put on 10/4/11, and has learned to walk on it using a walker. He can walk on it without the walker now, but it's not easy for him because the cast is very rounded on the bottom, not flat.

He has not had any pain, praise God.

It's been easier for us to go out as a family now.

Pumpkin Train with sister & cousin

Halloween- the whole fam