As we head into another season of school and surgeries I figured it was time to update how Leeza’s been doing. Unlike the rest of the Midwest, we’ve spent the summer enjoying these hot temperatures and have spent a LOT of time outside. I’ve kept the kids outside most afternoons and Leeza is fast enough on her crutches this year that she pretty well keeps up with everyone and can go anywhere they can (with the exception of the garden…crutches are not friendly to my plants!). She has learned to swing independently, climb the rock wall on the fort and likes to run races down our long driveway. She and Josiah have been attending summer school to help her retain what she learned last year and I took the opportunity to have her practice using the 2 flights of stairs in the school instead of riding the elevator. Not sure she was too happy with that choice initially, but she’s become a pro and I think she’ll be good enough when school starts back up to keep using them with her class. We still work on stretches every day to help release some of the contractures her body seems to like to develop and we’re supposed to be doing a lot of core workouts to help compensate for the muscles that didn’t develop in her lower body, but getting a 5 year old to cooperate with that has been challenging. I suppose that gives us a goal to work towards this winter!
We have also enjoyed adding Mrs. Joyce to our team as we care of Leeza. I drug my feet on having a home health nurse for a long time, but we decided to give it shot this summer. We all love Mrs. Joyce!! She comes 5 days a week in the morning to do part of Leeza’s daily care and it has relieved a lot of tension in the house and made the day flow smoother for everyone. We will lose her once Leeza starts back to school and we’re really hoping we’ll be able to schedule with someone else to come in the evenings.
We’re also in the countdown for the next set of surgeries. Leeza will be admitted August 20th to be prepped for bowel and bladder surgeries. Thankfully, they can all be done at the same time, but it will be a loooong day! We’ve been told to expect her to be out for 8.5 hours as they place abdominal ports for urinary and enema catheters, rework her intestines so we can do antigrade enemas, enlarge her bladder, reposition her ureters and tighten up an internal sphincter so she is no longer leaks urine. By the time it’s done she won’t have much of her original anatomy down in there, but it will be a huge step towards allowing her to be continent and (hopefully!) someday independent in her care. She’ll get to hang out at the hospital for a week afterward and then recuperate at home for a couple weeks before she’ll start school a few weeks late. At least that’s what we’ve been told…typically she gets so squirmy in the hospital that they release her early and she bounces back faster than expected. Guess we’ll just have to wait and see how she does this time. At any rate, she should be well on her way to feeling better by the time she turns 6 in September!