Life with our little ones is a constant adventure. Everything we do with them feels special and celebratory and I wish that I could share all of our experiences here in this little space of mine. It is challenging sometimes, not being able to talk about our littlest two, or to share photos of them here, but I understand why the rules are in place. As I've said before, while I share updates about Brennen and Andrew and I, know that there are two other sweet babes in on all of our adventures.. and we've been busy! We have been camping, swimming, canoeing and hiking. We have been participating in the Summer Reading Club at our local library (blog post on that coming soon!), and we have several events coming up that we are really looking forward to. We are loving our life as a family of five, and I will try to keep you guys up to speed, sharing here as much as I possibly can.
We have been making the most of this beautiful Summer weather, enjoying a good balance of days where there is no hurry to be anywhere, and other days that are full of scheduled activities and appointments. Between the three children, there is an abundance of medical appointments and it can feel all-consuming at times, like our entire life revolves around hospitals, health issues and constant worry. The Janeway has been a second home for our family, and while we would prefer not to spend so much time there, we have been fortunate to receive such great care for all of our kiddos.
Brennen has been doing well these past few months since his back surgery. He sits up super straight and is more comfortable in his wheelchair than he ever has been. Actually, we had his chair modified recently, taking out all of the foam-in-place support that he once needed and fitting him with just a flat back with laterals. He looks so good sitting up in his chair, we would like to think that our issues with him have resolved, but there still seems to be something not quite right. He has had some big seizures recently that have scared the heck out of us, and we actually ended up taking him in to Emergency one day last week because his breathing was not the greatest. This boy is keeping us on our toes, that's for sure.
Another seemingly ongoing issue (very common with CP) is his tone and spasticity. His legs are now pulling to the right in sort of a 'windswept' way. It has become difficult to change him and to get him into a seated position, and so we talked with our orthopedic surgeon about botox injections.
Brennen has had botox several times in the past, but always under general anesthetic in the OR. It has been a few years since his last botox treatment because we've been busy with the big stuff - like his hip surgery and recent spinal fusion, but his leg muscles have been really tight lately, and it was time for some intervention.
On Wednesday, Brennen had ultrasound-guided botox injections in his left leg and hip. This was our first experience with the ultrasound guidance, and I have to say that I went into it not really knowing what to expect, but the procedure was fascinating to watch! The whole thing took just about 20 minutes, and we were able to see the liquid toxin disperse throughout the muscles and start to work it's magic. The ultrasound is non-invasive and allows for continuous monitoring of the needle position, avoiding blood vessels and nerves, which results in a safe and precise injection.
Botox (botulinum toxin A) inhibits muscle contraction by preventing the release of acetylcholine and blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. Botox injections considerably reduce the discomfort associated with spasticity, and the results are almost immediate. We noticed a significant difference in Brennen's tone and range of motion that same night. Brennen didn't have any adverse reaction to the injections, and we were thrilled with how quickly we saw results. Brennen is the perfect candidate for botox treatments, and ultrasound guidance is absolutely the way to go for him. I joked with Andrew that any procedure after his back surgery will seem super minor, because really, comparatively it is.. but I know I shouldn't say that too loud because we never know what might be facing us around the next corner. We take things day by day around here, and today is a good day!
Brennen has to have serial casting on his left foot starting next week, so I will keep you posted on that!
Happy Summer!
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