pushing on up
In support of
Sienna Caines
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Sienna Caines
Happy Wednesday !
Sienna has been on a roll during therapy- she was actively pushing up to stand with her legs while in a seated position on the bolster with her therapist!!! SO AMAZING to watch her do this. Not only was she actively pushing up but she was smiling after with how proud she was of herself. This was truly the highlight of the last 2 weeks!!! Video posted on Cassandra's story on IG as previously mentioned for those that want to check it out!.
We've had quite the busy week+. Sienna had appointments at CHOP last Monday to see her pulmonologist and ENT. She also had a HAST (high altitude simulation test) study done to determine if it is safe for her to fly. Sienna passed the test but does require a minimum of 1 L of oxygen in order to safely fly as her oxygen levels dropped to 88% once the test was started. It was immediately stopped, put on 1 L O2 and then she maintained her oxygen above 98% for the remainder of the test. Her pulmonologist weaned one setting on her vent and ENT is upsizing her trach to help improve secretion management which will in turn improve safety for her however this will make tolerating her passy muir valve ( speaking valve that she wears when off the vent) more difficult. But, safety first.
We don't know specifics yet of her EEG, however, coming off keppra ( seizure meds) is a bit more nuanced that initially thought, per her neurologist. We don't see neurology again until end of October( though we are trying to get a sooner appointment) so we will know more then. This is slightly disappointing to hear however we want to ensure her safety at all times so if that means staying on the seizure medicine for now, then so be it.
We are a week and a half away from Sienna's first intensive at All kids are perfect in NC!!
Thank you for taking the time to read the updates about our miracle girl and continuing to support her journey. We are deeply grateful.
The Caines Family
Sienna has been on a roll during therapy- she was actively pushing up to stand with her legs while in a seated position on the bolster with her therapist!!! SO AMAZING to watch her do this. Not only was she actively pushing up but she was smiling after with how proud she was of herself. This was truly the highlight of the last 2 weeks!!! Video posted on Cassandra's story on IG as previously mentioned for those that want to check it out!.
We've had quite the busy week+. Sienna had appointments at CHOP last Monday to see her pulmonologist and ENT. She also had a HAST (high altitude simulation test) study done to determine if it is safe for her to fly. Sienna passed the test but does require a minimum of 1 L of oxygen in order to safely fly as her oxygen levels dropped to 88% once the test was started. It was immediately stopped, put on 1 L O2 and then she maintained her oxygen above 98% for the remainder of the test. Her pulmonologist weaned one setting on her vent and ENT is upsizing her trach to help improve secretion management which will in turn improve safety for her however this will make tolerating her passy muir valve ( speaking valve that she wears when off the vent) more difficult. But, safety first.
We don't know specifics yet of her EEG, however, coming off keppra ( seizure meds) is a bit more nuanced that initially thought, per her neurologist. We don't see neurology again until end of October( though we are trying to get a sooner appointment) so we will know more then. This is slightly disappointing to hear however we want to ensure her safety at all times so if that means staying on the seizure medicine for now, then so be it.
We are a week and a half away from Sienna's first intensive at All kids are perfect in NC!!
Thank you for taking the time to read the updates about our miracle girl and continuing to support her journey. We are deeply grateful.
The Caines Family
Comments
jackie varga about 1 month ago
Staceyannetodd26 about 1 month ago