In our last post we were planning on a second examination (and possible treatment) for FEVR at Children’s Mercy but that appointment was scuttled after Parker developed both pinkeye and an ear infection just in time for Easter. All those plans for an Easter dress came to naught given how poorly she was feeling. Thankfully after over a week of antibiotics both the eyes and the ears are all doing much better. We are still waiting on the appointment to be rescheduled.

Speaking of eyes, Parker’s glasses seem to be making a huge difference with her vision. Most importantly, Parker is definitely using her right eye (the less effective one) more, gaining both depth perception and binocular vision. We can tell she can see more things in a room, mostly because she is now demanding things that she wants that previously she seemed to be unaware of! No remote, cellphone, or tablet now escapes her notice. She also is less startled by things also, indicating greater awareness of her environment. Parker had a meeting with a staff person from the local school for the visually impaired to get “on their radar” but also to get some advice about how to continue to help her develop her vision.

Today we had a check-in with Parker’s pediatric neurologist, who is quite the character. He speaks in this breathless patter like a belt-fed machine gun, interspersed with the occasional bad joke. You can tell by the reactions of his assistants that they are all used to his personality and kindly tolerate his quirks with a certain amount of affection. His assessment of Parker was that the dystonia (uncontrolled muscle spasming) is causing her to have trouble standing in a stable manner, meaning she doesn’t trust her own legs to hold her up and so avoids trying to do so. Her feet end up tilting inwards, so if you imagine trying to walk on the inside arches of your feet you can see how wobbly you would be. Add to that additional neuromuscular complications and the notion that we could just train or continually work with her and see significant results isn’t a realistic one.

So what’s next? First, we are bringing in a physical therapist. We have had a couple of visits from at physical therapist through Tiny K, but now we are upping that to a specialist from LMH who in addition to working more regularly with Parker can begin to talk to us about leg braces to assist with her standing, etc. In addition, the neurologist is proposing exploring the option of injecting botox into some of her leg muscles to prevent the tightening from the dystonia to allow more regular use. It is a little outside the norm to be doing this with someone so young, but given that we are already seeing problems and understand the cause, treating earlier rather than later makes sense. This is especially true if the delays would just cause more problems down the line.

Having made huge headways with her vision, we are glad to start tackling some of the other big challenges facing her in hopes of getting the best results possible.