Today we had three appoints (ent, surgical follow up and mito).
Ear appointment: went well. Miss addyson has her hearing aid and is adjusting to it. It’s going to take some time but she left the office being able to put the hearing aid in and out by herself and use the control apps.
Surgical follow up: the surgeon was running an hour behind 😞 and sadly Addysons Xray isn’t where we needed it to be, so we are adjusting her flush regimen and will see how things progress. we will also discuss with gi tomorrow
On a side note Addysons bp was 103/65 which is better than the 80/40 she used to be without her med tailored for her dysautonomia.
Mito appointment: We ended up missing our mito appointment due to the surgery follow up running longer than anticipated so now we have to get this appointment rescheduled.
Tomorrow we have to go to chop for clinic—-so another long day
Addyson had autonomic Dysfunction. This means her whole nervous system is out of sync. It doesn’t communicate effectively. The brain doesn’t communicate to any other part of her body correctly so this is why even when we “treat” one system another acts up. We are not curing addyson. We are simply trying to treat the organs/system as it acts up to give her the best quality of life.
Beaming with hope 
So was hoping for better news today. We will keep praying for it to get better. Addyson we are thinking about you . We know how tough you are, but wish you didn’t have to be.
Love you both.
Mommy you are tough too and I know how tired you must be.
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