Today was a busy busy day. We started with Addysons covid test (for tomorrow’s procedure). She did really good with it this time. The lady even said she did really really good. Her results came back negative!!!!!
We dropped off the tree items to chop. They were so excited and happy. Can’t wait to see the pictures flood in.
Mito clinic: We had our follow up with mitochondrial clinic. Took lots of notes. Some of her muscle biopsy got damaged so they were only able to complete two of the three tests they wanted to run off the biopsy. We will stay on the mito cocktail. We will also meet with a neuromuscular specialist for a nerve conduction test and nerve biopsy. They want to test for small fiber neuropathy.
We discussed her epilepsy gene (adnfle-chrnd2). They said we should add in a Neurogenetics specialist on top of her neurologist. (So many doctors). They did tell us that her eeg showed bi lateral frontal spikes and waves.
Cardiology: we repeated her tilt table test to see if the florinef is helping. Her supine bp was 114/57 and bpm was 82. At the ten minute standing mark her bp was 97/65 and bpm was 119. She went from. 42bpm jump a month ago to a 37bpm jump so that is slowly improving.
Rheumatology: went as expected. He’s continuing with her protocol for FMF (fever disorder)!!! She’s been one year fever flare free. He said he will keep that part of her stable!!!! 💞 I really like her rheumatologist. He’s so good with her. We did have to go and get some lab work done he wanted but that’s outta the way and we will see him again in 6 months.
Beaming with hope 