Photos of our Clubfeet Correction Journey thus far

Here's a quick photo-recap of our clubfeet journey thus far.

6 days old, before beginning serial casting.
Ponsetti casting is the most well-known & effective non-surgical method of treating clubfeet.
Dr. Ponsetti came up with a particular method & sequence for repositioning/stretching a clubfoot.

Here he is after his first casting... broke my heart.














5 months of casting. New cast every 10 days.
A baby with casts from toes to thighs... it was not fun... but we got through it.













I honestly don't think we got real "Ponsetti" casting.
I didn't know any better back then. I would have searched out a specialist.
Josiah often kicked his cast down out of position. It even came all the way off more than once. :/

After 5 months of casting, we got his feet to this:

They were relatively straight (pointing forward) but not able to flex up right. The casting became ineffective because Josiah started kicking and wiggling his casts out of place. Dr. Hohl (and a second opinion doctor) came to the conclusion that surgery was necessary.
In September, when he was 6 months old, Josiah had surgery.




He had a Posteromedial Release on both feet.


3 weeks post-op Josiah actually kicked off his surgical cast.
I was very upset. A pin through is big toe also came out 3 weeks post op.
A new cast was put on in the doctor's office. Surely he could not make sure it was the same correction achieved during surgery. It was painful for Josiah to be re-casted like that so soon after surgery. (I should have found a new doctor then! Hind sight....)

The other pin was removed, staples removed & casts changed under anesthesia 6 weeks later. New casts were put on.

On December 9th, when he was 9 months old, the casts were removed for good.
His feet were perfect. We praised the Lord:




To help maintain correction, we used a Dennis Brown bar at night to turn his feet out...



... and Ankle-Foot-Orthotics. At 2 years old, he got ones that went inside big ugly orthotic shoes.




At 4 years post-op. Josiah's feet were still remarkably better than where we started; however, like I've discussed in previous blogs, his feet still turn in, especially the left.

After several different opinions (read the whole story here), we finally decided to go with Dr. Nelson & the Taylor Spatial Frame (which is what this blog is all about!)

Here are Josiah's feet the week before surgery (June 17, 2011)

Here is the Taylor Spatial Frame on Jo's left foot, post-op June 21, 2011.

June 27th, Day 6.
(It is amazing how much straighter the foot is even just by pinning it in place in surgery).

July 11, 2011 (Day 20)

July 25th (Day 34) Complication: due to the last 2 metatarsals not being secured, the outside of the foot started to twist under as it is pushed over. Surgery was needed to re-pin (or as I like to say "skewer") the bones better.

July 27th (Day 37)- Post-op. Foot is flat & much more secured with repositioned pins through metatarsals & another new pin towards heel.

July 31st (Day 40)
Lookin' straight! Done with our 1st prescription that brought the foot "over" to the left.

.


You can see the foot is pointing "down" (like tippy toes if he was standing). Now we are going to start bringing it "up" toward the body, which is called "dorsal flexion." That bottom (black) halo/ring is going to start angling so that the top is closer to the shin as we turn the struts (the up & down "poles").

Surgery, good. Morning after, rough.

Yesterday Josiah had surgery to fix the outside part of his foot/toes that were twisting under.
Since Tuesday's surgery was decided on Monday night, the insurance didn't get paperwork until 9:30am. I was called by the hospital to come in at noon, but of course once we got there, they wouldn't even let us go upstairs until the authorization was approved. (*long sigh*) >__<
After almost 6 hours of waiting around, they took him back.
The whole time we were waiting Jo did pretty well, even though he hadn't eaten anything since 3:30am (when I woke him up and made him eat a PB&J) ;) Thank God for laptops & Leapsters, which kept him pretty distracted. Of course, there was some whining about being hungry, but other than that he did great. I was impressed that he was so nonchalant about the whole thing. I figured after having gone through it once, that he would be fearful of the pain. He wasn't afraid at all. No freak outs. He just accepted what had to happen, and went with it. (I attribute that to all the prayers!)

Anyway, the surgery went very well according to Dr. Nelson. He was able to secure the part of the foot that was "falling" with a new pin under the foot, and by repositioning the two going across the top (through the metatarsals-- hot pink area below.

The problem before was that the metal rods (pins) going through did not "skewer" (my word) all the metatarsals. The last 2 were missed (which is usually not a problem), but in Jo's case, the lack of support caused foot to start falling/twisting under as we pushed the foot over to the left. The whole operation only took about 2 1/2 hours from when they brought him back to when Dr. Nelson came to talk to us. (I felt so bad for him! He'd been operating all day. I don't know how he does it... especially without caffeine! Ha!) Actually, I know how: he is anointed by God!
We got to go up and sit with Josiah in recovery for an hour. He woke up feeling pretty good! They didn't have to put the breathing tube down his windpipe this time, so his throat wasn't even sore. He had no pain due the nerve block. Once he drank some juice and was able to sit up, they let us go home. We pulled up in the driveway at about 9:45. It was a long day, but successful.
Even though it's swollen & discolored, it already looks a lot better from yesterday! Good job Dr. Nelson! :)





We will need to finish the last 5 days of our 1st prescription of turnings, then move on to the next phrase (dorsal flexion- bringing the foot up towards the body). We were happy to find out the next presecription is only 25 days instead of 40 like this last one. That puts "correction" done on 8/25. From there we'll have 30 days of stasis, then the TSF comes off (appx Sept. 22) & then we move to a short cast for another 6 weeks or so making our "finish line" appx. Nov. 3rd. (so right around Jack's 1st birthday!)


Josiah slept through the night, but woke up at 5:30am complaining of pain (which I expected since the nerve block was put in at 6pm and it lasts about 12 hours). I gave him OTC Ibpruphen. I really want to avoid the codeine if possible. I think the side effects are worse than than benefits. He went back to sleep until 8:30am, and woke up again complaining of pain. So I gave him OTC Tylenol.
We had a rough morning of screaming and crying off and on until I gave him the Ibuprofen again at 11:15. At noon, he finally calmed down. Now he shouts out occasionally, but seems ok for the most part.
I attached a video so you know what I mean when I say he's howling.






The good thing is he's not like this all day.
Right now (at 5:10pm) he is sitting quietly playing on the laptop.
It's still pretty rough when he does go through those "Mr. Hyde" moments...
Prayers appreciated! :)

Two Steps Forward; One Step Back.

TWO STEPS FORWARD: VBS


Last week, on July 21st we reached 1 month post-op.
The whole week was spent at our church's vacation Bible school. Josiah had a blast, especially because his best bud from Friday School, Josh, was there.

I was hesitant to bring him because I knew the other kids would stare at him and maybe say something hurtful; plus I figured we'd have to answer "OMG what happened to him?" a million times (and I was right!), but Josiah handled it like a champ. It didn't even phase him when one kid said it was creepy and another said it was gross. (Me on the other hand... well... just pray for me. Lol. Mama Bear syndrome). After the first day of gawking, I asked my mom to make him a cover for it. I gave her my vision and she made it happen! Twice!

First proto-type, too big vertically.. made it baggy... also iron-on velcro didn't stick well to the fabric).

Proto type 2, shorter vertically & around made a snugger fit. Sewn on Velcro held up well.

(Basically she got fabric. Sewed in a rectangle with a cord sewn in the top & bottom to cinch it up, and Velcro to close it up vertically. Pretty easy! It's breathable, soft, and easily taken on & off. Josiah wouldn't let me cover the bottom of his foot or the top "shin pin" because he doesn't like anything touching them, but I could have done it easily and it would have covered everything.
Although a lot of the kids stared (understandably so) and a few said some things since they didn't know any better, most of the kids in his group got over it the first day and talked to Josiah just like "any other kid."


I was thankful that the leaders allowed me to bring him and stay with him. They could have told me they were not "set up" to accommodate him, but they let me bring him. I'm glad I got to stay because not only would he not trust anyone to push him around and/or help him to the bathroom, I wouldn't want anyone else to do that anyway. My mom & sister were kind enough to take care of Ava & Jack so that I could serve my lil' guy in this way. It was a blessing for me to see him have as much fun as he could from the chair and it was just good to get up & out of the house each morning (for both of us!)
The most important thing is he (we) got to be in the Word! We learned that the Word of God is true, comforting, surprising, life changing, and for everyone (to be shared!) It is good to be reminded of these simple, yet profound truths. It was awesome to have been "sitting in" with him on everything so that we could discuss it all in greater depth as we sat alone together while the kids played games and later at home.
It was a great week at VBS. (My 1st time ever being "in" one... and I am excited about the possibility of serving "for real" next year.).

That week ended with a family celebration of all the "July Birthdays" on Sunday at my sister-in-law's house. Josiah got in her pool and played around for over 2 hours! He had such a great time in there with his cousins. Again, it was a blessing to see him just be a carefree kid.

TWO STEPS BACK: Surgery needed. Tomorrow!


6 days after surgery, June 27th, the bottom of Josiah's foot looked like this:

July 11th, the bottom of Josiah's foot looked like this:

14 days later, today, it looks like this:

To be honest with you, I hadn't really looked at Josiah's foot from this angle in awhile.
I can't believe how much the outside of the foot has twisted under in such a short amount of time. From what I understand, the pins that run through the top of Josiah's foot are not enough to support the outside/bottom of his foot, and as we're pushing it over to the left, the left side is curling under.

We are going back in for an operation to fix it TOMORROW (yes, on my 30th birthday, lol).
I don't know all that they're going to do to it (and I don't think they know until they get him in there, put him to sleep, and take some xrays). What I do know is that the doc said putting him under and fixing it will be the fastest and most accurate thing to do. The alternative involved moving wires and adjusting the fixator from the outside, which would have been VERY traumatic for Josiah and with not as good of a result.

They have to do it tomorrow because Dr. Nelson is leaving for Haiti on Saturday morning.
His week is already jam-packed, and I appreciate his willingness to fix this problem right away. I am also thankful that he made the decision to bring us in "early" to see him before he left instead of just waiting to see us until he gets back in 3 weeks.
He assured me that the correction we are pursuing is not compromised even though the foot is turned under. He also said that this operation will not compromise the good work that's already been done.
We just need to flatten the bottom of that foot out and give it some more support so that we can flex it upward over the next phase of "turnings."

When I explained it to Josiah, he was surprisingly ok with it. I thought he'd be afraid of surgery now that he's been through it, but so far so good, praise God! Of course, I am mostly concerned with the procedure going well, and with his pain after we get home... but I trust Dr. Nelson, and I trust the Lord.

So, that's the latest! Keep us in your prayers.

First day of week 4: Bumps in the Road

We have survived 3 full weeks. It seems like much longer.
We had 2 full weeks of torture, followed by one really good week.
So here we are on the 1st day of week 4, and we're experiencing some bumps in the road.
After a week of minimal pain and hardly any screaming, the last 2 days Josiah has both went to bed crying, and woken up crying. Again, it's hard to tell whether there is true pain, or some pain with fear, or just an "annoyance" that he can't mentally tolerate. All that is clear is that Josiah screams when this happens; it is heart-breaking and maddening (especially maddening at night when everyone needs to get some rest!)
The spot where he says his foot is hurting is on the outside (by the ankle). Well, I'm guessing since we're pushing it over that way, there would be some discomfort there, and I'm thinking that it will only get more uncomfortable the father it goes. I'm not sure. I'll have to ask Dr. Nelson and/or Treyton's mom about that.

Thank God most of the day, he does pretty well.
He is getting around more now (by scooting around on his booty), and learning to use the wheelchair on his own.

We also (finally) ordered him a pediatric walker that came today. (We had 2 different adult walkers given to us, but correct height really does make all the difference. *Standing with arms at the sides, measure from the wrist to the floor. That is the height you need. Josiah's is 20.5 inches).
Unfortunately, the 2nd time he tried to use it was unassisted since I was getting laundry from the garage; he fell backwards. :(
I told him he needs to always keep his weight/body leaning forward and to push down on the walker, but he hopped forward, and started to lose balance. When he stood up, his weight took him backward. He was more afraid than hurt.
Falling is a real danger, though. I heard from a woman in the clubfeet group on Facebook that her son fell with the TSF on and broke his leg! With the pins through the bones like that, I'm sure it's easy to do if you fall a certain way.
Anyway, I hope it doesn't deter him from using it. It would be a lot easier on us (and our backs) if he could at least use the walker to get himself on and off the toilet.
Let's just say I'm really happy we live in a small one-story house right now!

Anyway, overall, things are going really well.
I think it's unrealistic to believe that it will be a completely smooth road, so I praise God in spite of the bumps!

July 11, 2011

Having his big toe pinned makes it really hard to wiggle any of them...
it makes Jo go crazy sometimes.

Kind of concerned about the bump forming on the outside of the foot (on the top, right in the foto).

Swimming

Yesterday, Josiah went "swimming" in my sister's small above-ground pool. It is the perfect depth for him. He had a great time (wish I would have got a pic!)
Such a blessing to see him having fun again.

First day of Week 3: Things are looking up.

June 27th, Day 6.
(It is amazing how much straighter the foot is even just by pinning it in place in surgery).

Fell asleep this way! Whole frame resting on the other big toe!

When a fellow TSF mom told me that the first two weeks would be difficult, I had no idea what difficult meant. I would venture to say it was more than difficult. It was torturous. It was maddening. It was exhausting. BUT we made it through. I am well aware that even if that is the worst thing we ever go through, we are very, very blessed.

It is day 15 and Josiah is doing great. I'd say he's about 90% back to normal and I think each day will get better. Today, he has not even had OTC meds since 4:30am. Every now & then he says, "Ow, it's hurting," but when I ask him if he wants medicine, he says no. (He hates the taste of them and I think he is realizing that his pain is manageable & intermittent.

Today we tried to use a walker my mom found, but it's the wrong height, and since Josiah's right foot is clubbed too (though not severe) it is hard for him to hop on one foot while lifting the fixator. I am weary of taking him to the bathroom in his wheelchair every time he needs to go. I read on another mom's blog that her son scoots around on his bottom everywhere, like a crab, so I suggested Josiah try it. After some coaxing, he tried it and was pleasantly surprised that it didn't hurt and that he could get around. I think he is realizing he can do more with it than he thought. I told him, look, you could even sit on the floor like this and play with your Lego's, etc.

Josiah scooting around and his shadow, Ava trying it out too.

So that other 10% is the drama that comes with getting him to try something he hasn't done yet with the fixator (and the occasionally howling about pain). Today's drama came via bath time. He had some dried blood accumulated around a pin, and I wanted to gently push it off while the foot was underwater. He screamed and cried about the idea of it for a few minutes until I finally just did it.
*sigh* Exhausting.

Another bit of drama is occurring during the turnings. I don't know if it actually hurts him, or if he just thinks it will/does. We're not actually turning the pins in his foot, but I think he thinks we are. We are moving the frame a mm or 2 each night, and of course that does move the foot... but I can't imagine it being enough to hurt... If we did like 5 or 6 mm, yes, but not 1 or 2 mm. I don't know.

Anyway, things are looking up. He had his first outing this weekend for the 4th of July. He went to see Cars 2 with his dad, and then we joined our extended family to watch a firework display.
It did my heart good to see him laughing and joking with his cousins.

Praise the Lord for being with us and for revealing himself, personally, to Josiah through this ordeal.

Day 12: Cautiously Optimistic

We decided to wean him off the codeine.
I think it was negatively effecting his mood and causing his emotions to be exaggerated.
In addition, I think that the "drop off" of the narcotic was making his pain feel more intense when the meds wore off.
We switched to 10 mL (2 tsp) of over the counter Children's Ibuprofen every 6 hours and 10 mL of Children's Tylenol every 4 hours.

After a few rough nights & mornings, we have seen 2 decent middays, which lead me to believe that the medication switch is working, and that when Josiah is tired, we see more outbursts. I think when he's tired, he just can't handle anything.
Last night when he was getting belligerent again, I remembered that Dr. Nelson said that if Benedryl calmed him down, we could use that too. I knew he was exhausted, and I was tempted to give him the codeine though he hadn't had it all day, just because i wanted a good nights sleep for all of us! When I checked the Benedryl bottle, I realized that the active ingredient in Benedryl (diphenhydramine) is the same ingredient used in sleep-aids like Tylenol pm. So I gave him a dose at 10pm.
He slept until 3am. He woke up complaining, and since it had been 5 hours, I gave him Tylenol again and another dose of the Benedryl. He slept until 9:30am and woke up without screaming for the 1st time in 10 days!
My husband took the baby and let me sleep in; I was expecting to be woken up by Josiah's screams, but when I got up at 9:45am and went to check on him, I was surprised to find him sitting in the recliner playing his Wii! I said, "Good morning! How are you feeling?" 
"Good."
"Wow, so no pain this morning?"
"Nope."
"Praise the Lord, Josiah! That's great!"
"Ya, God's helping me."


It had been over 6 hours since he had any meds, so I gave him fresh doses of the Ibuprofen and Tylenol. From everything I've read, nipping the pain in the bud is the best policy... proactive pain management instead of reactive. 
I think I'll use the Benedryl just a night for a while if it helps him sleep.


Another praise report is that we got him in the tub for the first time yesterday. Dr. Nelson cautioned us against soaking the fixator in warm water because it fosters bacteria growth; however, he said that we could do a chlorinated lukewarm bath. (A shower would be best, but Josiah hates showers; if he was willing to get in the tub, I was not going to fight him on it! He needed to get clean, period!)
After some drama (fear) of the potential pain of putting the foot in water, once he got in he was pleasantly surprised that it felt good.  

Thank God for the little victories! They keep us hopeful. 


We are cautiously optimistic that we're turning a corner here.