When Lainey was younger, we did physical therapy to stretch her legs and attempt to keep her range of motion.
When she was 5, we had AFO braces made for her to keep her from going up on tippy toes and encourage a normal rolling pattern. They worked, when she was able to wear them. Unfortunately, her hands and feet perspire ALOT (hyperhidrosis) and between the moisture and her braces, it often caused blisters and skin irritations. Then she'd have to come out of the braces and she'd be right back up on her tippy toes.
When she was 6, we did a summer of serial casting. They casted her feet with her toes pulled upward to stretch her Achilles tendon, that had shortened over years of not stretching it. If you don't stretch it, it doesn't grow. She did two sets of double casts to the knee. It was a miserable summer but it had to be done. She could walk with the walking boots at the end of the casts.
Within maybe 2 weeks of coming out of the casts, she was right back up on her tippy toes. At that point we were told to remind her (as if I had not!) to stay on her flat feet and to roll her feet. We were told there was a small chance that she could have botox injections to weaken her overly active muscles. That was quickly taken off of the table and we were told our only option was surgery. But we were told that most likely the surgery would not work. So we continued to remind Lainey to roll her feet.
When we had our first appt with our family doctor, I mentioned her tippy toe walking and he encouraged me to seek a second opinion and gave me the name of another orthopedist. So that is where we had our appt this week.
This doctor had infinitely better people skills and after examining Lainey, she doesn't believe that it is the Achilles tendon that needs lengthened. She says it is the gastroc muscle (aka gastrocnemius muscle.) I asked a zillion questions and she patiently answered them.
What's the difference?
The gastroc. muscle is one that goes all the way up to your knee. When Lainey bends her knee (taking the pressure off of her gastroc muscle) she CAN bend her toes up much further than when her foot is held straight. If it was her Achilles tendon, then she wouldn't have that ability.
So what does that mean?
It means that Lainey doesn't have to have her Achilles tendon cut in half (!!!!) to lengthen it. It is a much less stressful surgery for her body to go through because it is less invasive. Dr. K seems to think that if we would have done the tendon surgery that it wouldn't have worked because that isn't the problem! Thank you Jesus for giving me the gut feeling to not go ahead with surgery with the last doctor.
Why do you have to do anything?
Well your heal doesn't widen/grow unless you put weight on it. Lainey has the same size heal as say.. Xander. Buying shoes is nearly impossible. Also, God made our joints with a specific purpose. When you start putting pressure on the wrong joints, there are consequences. Her toes/the end of her foot is starting to show issues. Also, her hips, lower back and knees are all showing issues.
So what are the details?
Lainey will have a 2-3 inch incision site on the inside of her calf. It will be day surgery in September. Dr. K doesn't see the point in ruining a summer of playing and swimming since she has waited this long. She will be casted while in surgery and will have that first set of casts taken off 4 weeks after surgery. At that point, they will decide if she needs a second set. When casting is done, she will have physical therapy to build up her muscles/reteach her how to walk properly. The length of physical therapy will depend on Lainey's cooperation and how well she recovers.
And then what?
Then we start with Julianne. Julianne has not had anything done other than the stretching because she still has the ability to sit in a W. (You know that uncomfortable position kids sit in with their legs out to the side in a W? That!) Her ligaments and such were still loose enough that our old orthopedist said there was no point in doing anything. And then in the same breath he said 5 is a major boundary as far as having this fixed. (Remember, Lainey is 8 and Julianne is 5 now.) So, Julianne has some time but we will need to address this. Julianne is a candidate for the botox injections and then serial casting. Dr. K sees no point in me having two in casts together, so we are going to prioritize Lainey since she is getting further from the ideal therapeutic window. Then Julianne will do hers. And guess what.. not the tendon again... It's the gastroc. muscle causing hers too. If botox/casting doesn't work, then we will have to have the same surgery for Julianne.
Thank you for the prayers! We appreciate each and every prayer said on our behalf..
~Steph
