Post AKAP & neuro follow up
In support of
Sienna Caines
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Sienna Caines
Hi everyone!
It's now been about a week and a half since we've gotten back from Sienna's 1st intensive at AKAP. We are continuing to do the home program assigned to her as well as her daily therapies at Blythedale. Sienna is also working on increasing her time off the ventilator to see if de-cannulation is even a possibility in the future. As we have previously said, with her brain injury there are a lot of unknowns but we are going to try and see what happens. On average, she is currently doing about 3 hours cumulatively a day off the vent, so we are working towards 4-5 hours.
Sienna had a follow up with neurology yesterday to discuss her results from her EEG done at the end of August. We are a little disappointed to say that at this time it is not safe for Sienna to come off keppra ( her seizure medicine). Her EEG found that when she is sleepy/ sleeping overnight, she is having "frequent right temporal spikes and sharps that are suggestive of an epileptogenic focus of this region". In layman's terms , the neurologist explained it as there is a guy in the woods striking a match and waving it around to see if it will catch fire to create a wild fire. These temporal spikes & sharps are that match and the wildfire are the seizures. While she is not having seizures, the keppra medicine is keeping that "match" at bay and preventing the seizures from potentially occurring. We were hopeful to stop keppra but at this time that is just not safe with what was found on the recent EEG. A seizure could lead to a potential huge set back and we want to avoid all setbacks possible. So for now, she will continue to take keppra to keep her safe.
We leave next month for Sienna's next intensive at the NAPA Center in Boston starting on November 30th. This intensive is 3 weeks long and will include speech to continue to work on learning how to communicate with her AAC device.
A continued thank you to everyone who has supported Sienna and our family through donations, prayers, shares, and check-ins. We are so incredibly grateful for every single person who has taken the time to support Sienna on her brain injury recovery journey. These intensives are such an important part of her progress and we truly wouldn't be able to make them possible without all of you. Every donation, share, prayer and message means more to us than you know.
-The Caines Family
It's now been about a week and a half since we've gotten back from Sienna's 1st intensive at AKAP. We are continuing to do the home program assigned to her as well as her daily therapies at Blythedale. Sienna is also working on increasing her time off the ventilator to see if de-cannulation is even a possibility in the future. As we have previously said, with her brain injury there are a lot of unknowns but we are going to try and see what happens. On average, she is currently doing about 3 hours cumulatively a day off the vent, so we are working towards 4-5 hours.
Sienna had a follow up with neurology yesterday to discuss her results from her EEG done at the end of August. We are a little disappointed to say that at this time it is not safe for Sienna to come off keppra ( her seizure medicine). Her EEG found that when she is sleepy/ sleeping overnight, she is having "frequent right temporal spikes and sharps that are suggestive of an epileptogenic focus of this region". In layman's terms , the neurologist explained it as there is a guy in the woods striking a match and waving it around to see if it will catch fire to create a wild fire. These temporal spikes & sharps are that match and the wildfire are the seizures. While she is not having seizures, the keppra medicine is keeping that "match" at bay and preventing the seizures from potentially occurring. We were hopeful to stop keppra but at this time that is just not safe with what was found on the recent EEG. A seizure could lead to a potential huge set back and we want to avoid all setbacks possible. So for now, she will continue to take keppra to keep her safe.
We leave next month for Sienna's next intensive at the NAPA Center in Boston starting on November 30th. This intensive is 3 weeks long and will include speech to continue to work on learning how to communicate with her AAC device.
A continued thank you to everyone who has supported Sienna and our family through donations, prayers, shares, and check-ins. We are so incredibly grateful for every single person who has taken the time to support Sienna on her brain injury recovery journey. These intensives are such an important part of her progress and we truly wouldn't be able to make them possible without all of you. Every donation, share, prayer and message means more to us than you know.
-The Caines Family
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