We saw Dr. Nelson yesterday (praise God he made it back safely from Haiti and was able to do a lot of admirable work there. He said he operated on at least 20 clubfeet cases! God bless him!)
That's the good news.
Now for the bad news (well, it's not bad, really... just disappointing).
(Before I get to that, I'd just like it noted that we left our house at 3pm and got home at 7:30!
I love Dr. Nelson, but I hate going to see him. Our appointment was at 3:40, and we did not see him until 6:30. It definitely provides an opportunity to practice patience and to model a good attitude to Josiah. Not easy! That said, I feel bad for Dr. Nelson though, too, because HE was there that late! I don't know anyone who works harder than that man).
Anyway, we had gone to the appointment with the mindset that we were done with the turns/correcting and that we would now begin our 30 days of "rest" (with the fixator on) and then the 3rd week of Sept we'd have the fixator replaced with a cast.
After Dr. Nelson looked at Jo's foot & xrays, he said that we needed to do 15 more days of turning to bring the foot up 15 degrees.
I had a suspicion that the foot was not flexed up enough, and I even emailed Dr. Nelson asking him about it last week ... I asked how much Josiah's foot should be flexed because right now it is pretty flat. I was right. Dr. Nelson said foot is currently in "neutral."
If you compare this picture to previous ones, you'll see that the bottom halo is now pretty level, whereas before, the front was angled down. It needs to come up.
(In this last picture, you can see the difference in the shape of his feet, how much "over" the left one is currently stretched, and his (in)ability to put them "flat" on the floor).
I wonder if it should have been 40 all along? Dr. Nelson was leaving for Haiti when he gave us the last one. Maybe it was an oversight? I don't know. I guess it doesn't matter. The only change would have been our perception of "the end." Now instead of being in a cast by the last week of Sept, it will be the middle of October.
It's not the end of the world; just disappointing.
It's like when your 9 months preggo & the doctor pushes your due date back 2 weeks... or when you're running with the finish line in sight, then suddenly it is pushed back another 2 miles.
I think I am more disappointed then Josiah.
I am weary of the TSF and the limitations it puts on our family.
Yes, things could be worse, and I am thankful that this is all we have to deal with...
but I'm still weary of it.
Another thing that kind of bothered me yesterday was a comment Dr. Nelson said referring to the right foot. I was asking him about Josiah's other foot and how soon we'd do anything to it (if we do anything at all). He said it was up to us-- that he could put a TSF on the right when he took it off the left-- but that he'd ideally like for us to wait and see what we think of the left's results--- to see if we think it was worth it.
Worth it?
Doesn't he think it's worth it?
I mentioned that I was already thinking it not wise to do anything immediately to the right for the sake of the left's complete recovery. How could he learn to walk/run and gain flexibility on the left again if the right was now immobile?
He agreed that he'd like to see him running around on the left before doing anything to the right. I asked about Treyton (another patient who is done with his TSF & cast) and about his mobility. The last time I talked to his mom, Treyton's foot was very stiff.
When I brought that up, Dr. Nelson explained that Josiah would always have limited mobility in his feet. This "correction" does not improve mobility (nothing can).
I don't know why I hadn't heard this before.
If not to increase the function of the feet, why did we do this?
Just for appearance? So that the foot is "straight"?
He explained that a normal foot's talus (ankle) is rounded and fits nicely in tibia (leg bone). Clubfeet kids have a flat talus, so the ability to flex the foot up will always be limited. (Something I had never been told before. I'm learning more about clubfeet now than ever. I wish I would have learned these things when Josiah was a baby). I found a couple great sites to help me understand:
Clubfoot Parent's Guide
- Offers a easy to follow explanation of what a clubfoot is, what bones are effected, and what a normal course of correction looks like.
- This one helps me understand the anatomy of the foot and the vocab necessary to follow what the doctor says! It offers a 360 degree diagram of the foot and when you hover over different bones, it gives the name.
The 1st site helped me understand that the goal of clubfoot correction is to help the child be able to put his foot flat on the ground. As a baby, it was obvious that something needed to be done or he would not be able to walk on his feet.
Before this surgery, Josiah could walk, but he was not able not put his foot completely flat on the ground. He would put his weight on the outside of the foot instead of squarely on the heel & ball of the foot. You can tell by just looking at the correction we've achieved so far that his foot is much flatter than curved like before. Whether that will change his gait, I guess we will have to see.
The goals of his first operation were clear.
I guess I'm confused as to what the goal of this surgery is besides "straightening" the foot. I thought it would improve his foot's function and now I'm not sure.
I will email Dr. Nelson with these questions.
