Thanks to all for the sweet messages, calls, texts and prayers for Brody & Kylee. Being up at 3:30am made for a lonnngg day, but all went well! We’ve been told for a while now that Brody & Kylee, due to their Cerebral Palsy & hypertonia/dystonia (tight muscles), may be good candidates for Botox. Even with physical & occupational therapy, constraint therapy, orthotics and endless exercises and stretches, these two will likely have minor issues due to their CP for years to come. After visiting with their neurologist in December, he thought it would be good to give the Botox a shot.
“Following intramuscular injection, the neurotoxin causes a reversible neuromuscular blockade, creating both muscle weakness and a reduction in tone.” We were told that basically the Botox will temporarily paralyze or weaken the nerve endings allowing more flexibility and allowing us to stretch their muscles more effectively.
Brody received 8 injections, 4 in each leg. Because of his tone, Brody toes walks from time to time and his legs stiffen when he runs or gets excited (diplegia CP). Kylee’s hemiplegia CP affects her left side. Her left foot turns inward and she’s also very tight. The doctor used a special needle to both electrically stimulate the muscles and deliver the medication in her leg and hand. She received 5 injections in her left leg as well as one near the thumb in her left hand hoping to give her more range and a more natural and easier grasp. Kids don’t always have to be put under anesthesia for the procedure but given the fact that they’re young, there’s two of them (one will freak the other out before it’s their turn) and they both were going to receive multiple shots, their doctor thought it was best they were asleep for it all.
We took some video of both Brody & Kylee before their injections doing daily things that show their tone and difficulty. We were told that we won’t see any improvement for 3-7 days. Once we do (hoping we do, at least) we’ll show the before and after videos so you can see for yourself. After talking to many of their doctors as well as other parents of kids with CP we’ve learned most people see great improvement after the shots. The Botox can last anywhere from 2-6months depending on the child and the severity of their tone. Many kids continue treatments as needed. We’ll visit the neurologist again in 2 months to discuss how it worked for our two and if continuing treatment will be beneficial. Here’s a helpful site with additional info: http://www.cerebralpalsysource.com/About_CP/botox_cp/index.html
We had the procedures done at Cook Children’s in Fort Worth, the same place Brody had his shunt placed at 32 weeks gestation. His neurosurgeon and their neurologist work side by side which is a plus for us. It was still dark when we arrived at the hospital. The roof of the building is trimmed in blue lights, very pretty if I do say so myself. Upon seeing it Brody squealed from the back seat “Oooohhhh I’m sooo essited!”
Here’s Kylee after taking her “happy juice” while waiting for Brody to be sent to recovery. Girl was loOoOopy! She attempted to sing her favorite song “Pontoon” by Little Big Town and insisted her name was “Grandmudder”. Bret and I had some good laughs while chatting with her, that’s for sure :)
The procedures were pretty simple and only took about 15mins each. Bret & I went to be with Brody and Kylee joined soon after. Poor dude tried and tried to talk to us while waking up but nobody could make out what he was saying. Once he gained speech he immediately asked “Where’s my coke?”. He had chosen a cherry coke flavored gas as he was going to sleep but apparently he thought he was gonna get an actual coke (which would be a real treat for them) somewhere in the process! The nurses hooked him up with a sprite and that may have been the highlight of his whole experience..ha! I also heard him mumble to the nurse that he wanted to watch the Dallas Cowboys. Mickey Mouse clubhouse had to do ;) The injection sites are so small you wouldn’t even notice them if you weren’t looking. Kylee’s 2 failed IV attempts were another story :/
A few popsicles and sips of sprite later they were ready to go. The anesthesiologist came in and gave the go ahead to have IVs removed. Bret was out of the room and I was over with Kylee only to turn around and find Brody had removed his IV by himself…blood everywhere. Didn’t phase him a bit but freaked his me out until I figured out what had happened! The nurse came in and Brody proudly told her “you were not here, so I did it!”
It was within just a few hours that Brody & Kylee were up and at it just like normal. No complaints of pain or soreness in their muscles or at the injection site which makes mom and dad super happy! They know they received something called Botox to help them but have no negative associations with the whole process which is great if we do continue treatments. We’ll update soon with their progress!