Bini had his first appointment yesterday. It went exactly as we thought.
He needs at least one more surgery, possibly more depending on how well this one goes.
3 weeks in full leg casts.
3 more weeks in knee down casts.
That was the basic gist of the appointment.
“Will he ever walk ‘normal’? I ask
“Yes he should, though when he runs you’ll probably always be able to notice a difference, his ankle bones are just kind of fused together from being older than most kids.” The doc says. And then adds, “You’ll want to get him the best education you can because he won’t be able to work on his feet. People with club feet start noticing mid-foot pain in their 40s. That’s at least 20 years before retirement so you won’t want that.”
Ironic, I suppose, since my son was born in a country where he would’ve had to work on his feet. Had he remained in Ethiopia, there’s a good chance he would’ve been one of the beggers on the street. I’m not exaggerating here, I would say at least half the people we saw on the side of the street who were too old to be considered kids had some sort of lameness to their legs. Whether from club feet, polio or what have you. It’s just too depressing to think about.
But he was impressed with how well Bini got around now (everyone is) which makes him optimistic for Bini’s future.
I don’t know, it was exactly as we thought. When we were considering the boys on the waiting child listing we figured, “Yeah, we’ll get him home and then we’ll have another surgery or so and it’ll be fine.”
And it will.
But it’s different. This isn’t some little boy in Ethiopia who might one day be my son.
This is my son. And I don’t want him to suffer through this. Through the surgery, through a night in a hospital. Through 3 weeks with hot casts that won’t allow him to walk.
This is my son.
Which makes this whole thing totally blow.
It’ll be fine, he’ll be fine, logically I know this.
But man what I wouldn’t give to take his suffering.
So if I needed any reassuring as to whether I’m loving this little boy. There it is.
None of this leaves me with regrets, only a renewed vigor to enter into suffering with this boy who’s crawled his way into my heart and made a home there. So here we go.
Where is he being seen? My friend Tracey has AMC and I don't know if she had clubfeet but she's had a TON of surgeries. If you want to talk to her PLEASE email me and I will give you her info. She's always the girl I go to when dealing with any joint disorder of any kind. nobabynoblog at gmail dot com.
My heart goes out to you and your son. I don't know you personally but from what I've read you are an amazing mom and because of that he is going to be just fine and pull through like a champ!Sarahttp://thelyonsden-saralyons.blogspot.com/
Hi, I'm Tracey, Molly mentioned me above. I have a clubfoot as part of my congenital neuromuscular condition called Arthrogryposis (AMC) (instead of just stiff feet, all my joints are stiff & contracted). Is the surgeon you're seeing a Ponseti Method Trained doctor? Serial casting according to Ponseti can often recorrect feet in kids way older then infancy. My ponseti trained surgeon (I saw him after my 1st ortho did surgery and not until I was 20) regularly serial casts older kids who already have had a surgery and achieves correction. I'm not promising this approach would work, especially if he has "bony changes" but serial casting might work and it might reduce the amount of "work" that has to be done in surgery. Dr. Ponseti studied clubfeet that were operated on and found that those who had surgery had pain in adulthood whereas kids treated by Ponseti had little to no pain. Feel free to contact me tracey at amcsupport dot org
Sweet Boy. I cannot wait to see what the future hold for him!
I haven't commented here before but I just want to share that I completely understand where you are coming from. My daughter is 21 months and has progressive infantile scoliosis. She will start her torso casting on Tuesday. She will be in a cast for 8-10 weeks at a time then get a one week break and then back in a cast. This could go on for as long as two years. It terrifies me yet I know it is what needs to get done. I would do anything in this world to make it go away and to take the suffering away so she can just be a kid. The worst is that with each cast she needs to be intubated which is scary. We are doing the casting to hopefully prevent spinal fusion surgery. I guess I share my story to let you know you are not alone. I send you hugs, best wishes and strength. Our kids are amazing and they are fighters. This is going to be way tougher on us moms than on our kids. hang in there. We can and we will get through this and we will be sharing the amzing accomplishments of our kids with friends, family and facebook.
Praying for you and Bini. He is such a cutie and I know you will get through these trials like you seem to get through everything else: with grace and humor.
Oh, Tesi! I ache! Sending you lots of love, and lots of sloppy kisses from the twins!!Anna and Tarren