12/16/2025
Ellie Ann’s first surgery is scheduled for January 23rd in Atlanta ( tonsils and adenoid removal) I say first because it seems she will have more to come in the future.
Prior to surgery a swallow study will be done to check for aspiration. Lately she has been coughing when she is drinking thin liquids . This has been an issue in the past which is the reason she had a feeding tube at one time. So this will determine if they need to go in and also repair A laryngeal cleft.
The sleep study done in September was worse than the one done in last spring . So another one will be scheduled around April .
After this they will determine if she will then need a ventilator/cpap machine during sleep . 😴
From now until surgery I have to increase the amount of puffs she takes a day on her inhalers .
Yes 2 different ones . This will hopefully help her during surgery .
We are hoping to get into neurology soon to have her meds adjusted . The seizures are still there ! and the rage she is having from her medication is terrible .😞
There’s a lot going on and can be overwhelming but we are still going strong .
Thanks for the continued prayers . I’ll update more after our next appointments.
