At this point in life, you guys are basically just going to be seeing reviews and updates on the blog. Medical appointments galore leave me little time for anything else. Life is busy.
Emma’s neuro appointment went great. Her new doctor was impressed with her and with my extensive knowledge of her medical condition. He feels that we’ve been pretty thorough with finding answers to why she toe-walks and agrees it’s sensory related. Yes, my baby has SPD – all of them do as a matter of fact.
When Em was little she hated to put her feet on the ground. It was cute. She was cute and like most parents, I thought she’d outgrow it. Until she didn’t. And then we began seeing doctors.
From 8 to 13, we kept going back and forth from this doctor to that. 3 to 6 month appointments to see specialists to determine why she has this condition quickly add up and time passes by. Before we knew it, she was 13 and at Duke. She had surgery to repair her stance, stretch her tendons and correct her toe-walking over all.
The surgery was great. She healed well. She could put her heals down for a while. Her balance has improved. We went back to 3 month and then 6 month appointments. And now here we are continuing her care.
Her tendons are still tight. The strength this child has in her body is amazing. It always has been. She kicks like a horse. Her sensitivity level is extreme. She still hates feeling things on her feet and we believe that is why she is back on her toes. Even shoes and socks bother her.
So the next step is using something similar to botox to relax the muscles and to do serial casting to get her to a better stretch without surgery. We will have weekly appointments to cast her and biweekly appointments for the injections. We are hoping this is the final step to being able to correct this issue but only time will tell.
Emma’s nasal surgery has healed wonderfully. We see her ENT next week to follow up with that. She still has no sense of smell but we believe that is also a sensory issue. She can breath better which was one of the goals of that surgery to begin with.
Tomorrow will be her first real allergy shot and Friday we have an appointment with her regular GP. This is why life is so busy. Each week for the next few months we will have two different appointments at two different doctors in two different cities near us. A special needs Mother’s job is never done.
Laycie is doing amazingly well so far on her lower medicine dosage. She has her next neuro appointment next month on the same day as Emma’s first scheduled injection and casting appointment. I’m thankful we were able to get those on the same date so that it’s easier on us all.
So this is where we are at right now in life. Back to back medical care until after the first of next year. I’m so thankful we have a wonderful team of doctors working to give my beautiful babies the best they can.
Until next time…
Dana
