I took him in to see his doctor who wrote it off. I went back a week later and another doctor took me seriously, and put in a physical therapy consult. We waited months to get into physical therapy so of course he got worse.
We learned that Luke was a toe walker due to short Achilles Tendons. When I speak of 'range' I'm using the scale they taught me. Here's a quick rundown. Negative range is on the toes, Neutral is flat foot, and Positive range is being able to get the toe up high above the heal. Luke was -15 on the left foot and -15+ on the right. (I think their measuring tool only went to 15). "Normal" is +15 with a heal to toe walk.
We did therapy for a few short months and saw some improvement and we saw an amazing Orthopedic Surgeon at CHKD. He recommended continuing therapy and let us know that surgery (if done now) would need to be repeated every year or two because every time Luke grows, his tendons would be too short again. He said no matter what, he will most likely need surgery at 10-12. Then Luke's therapist quit, we went back on the wait list, he lost range, and we were back where we started. But we had AFOs made, we fought weekly to get a better fit. Never did they actually work on him, so after 2 months we gave up and went back to the Orthopedic Surgeon. He gave us two options, putting Luke under and stretching him as much as he could and casting in that position or get back in therapy. Of course we did not want out baby on the operating table, surgery or not so he did everything in his power to get us therapy at CHKD asap, bypassing their HUGE wait list. CHKD is the best, everyone wants to have their kids seen there, so we were grateful! Sure enough, he came through within a week. So quickly I was still fighting our insurance, and rallying prayers from anywhere I could get them. God does things in his own time though and the day of the therapy, as I'm prepared to write a $400. check to not lose that precious spot, I get a call that the insurance went through.
Luke's therapist is amazing, he does so much at therapy now that he never did at the old location. We were not welcome to go back at our old location, here we are encouraged to get involved. And we have a 1 hour slot once a week, we are making huge strides! Luke was very close to neutral! Then his therapist recommended serial casting and the Orthopedic Surgeon signed off on it quickly. We were told there was a wait list for that as well. So I didn't stress about the insurance going through right away. Two days later they had an opening, if I didn't take it he'd be waiting a few months, and as my belly was growing with baby #3 I didn't want to wait. So I went to battle with my insurance. They wanted me to drive one hour each way, once a week, for 6 weeks to the Naval hospital for casting. I wanted all of our care at CHKD, minutes from our home. Lots of tears, stress, and requests for prayers and God came through again, ON THE DAY OF THE APPOINTMENT!
Week 1 of casting, he was walking on his toes all week, how could this help?
Week 2 of casting, still on those toes! But we saw some great progress week 1 even on the toes so we put our faith in the professionals. (He cannot walk for 1 hour after casting as he allows them to dry properly.)
Week 3 Luke was up to +10 range! Enough to cast for AFOs! And he picked some crazy Black & Glow in the Dark White Casts for the Pirate Festival that weekend!
I'll keep you updated on his progress! Thanks for reading!
