Rayleigh has been tolerating her VNS very well! Every 2 weeks we are seeing her neurologist to adjust the strength of her VNS. When I say strength, I am referring to how strong the pulses are. We are also to the point in the journey where you can start adjusting the duty cycle. The duty cycle is how long the VNS pulses and how long between the pulses. The starter point is: pulsing for 30 seconds then off for 5 minutes or more commonly spoken as 30 seconds of pulsing every 5 minutes. This is automatic and goes on and off by itself all the time.
Buggie is currently at a setting of 1.25 strength (out of 2.0) and her VNS is pulsing for 30 seconds every 3 minutes.
We decreased her off time to try and zap a few lingering myoclonic and tiny partial seizures that continue to happen during the day. Next week we will go up to 1.5 strength with the same timing. We will probably stay at the 1.5 setting for a little while because Bug has had such an improvement already and while we are at the 1.5 we can adjust the duty cycle. If seizure control is still not gained to a desired level (0-2 tiny seizures a week) then we can increase the strength.
So other than being a tad overwhelmed between the life of a special needs mom (meaning medicine, all night parties, pain management, doctor appointments and multiple therapies a week), and taking care of the husband and house and working my booty off on CutieBug party decorations everything is normal for us. I will be taking on more orders than usual with my Etsy business for a little while because we are trying to save up for a minivan with wheelchair ramp so if I am MIA from this blog you can find me on Facebook or text me if you know me personally and want Buggie updates :)
When I get past the crazy at-home work schedule I plan to do a few posts about the various special needs equipment we've tried/used/ordered.
No comments:
Post a Comment