Infusion # who knows ๐Ÿ˜‚

Yesterday ethen had his eye appointment. His script has changed (gotten worse) but with new glasses they got him to 20/20. However we are screwed if his glasses ever break because he’s way past the eye sight for driving (when it’s time). We will always make sure he has a spare pair w him. HeContinue reading “Infusion # who knows ๐Ÿ˜‚”

Gi update

So we have had a few people ask for updates from yesterday. It’s tough. It’s emotionally draining. I needed a day to think through it all, discuss it and then find a way to explain it. We left with another new diagnosis and no new treatment options. For the second time in 8 weeks weContinue reading “Gi update”

Tree drive drop off and Drs appointments

Another busy day. Addy had two Drs appointments today and home hospital teaching. We also decided that today would be the tree drive drop off date and lunch with a friend! First appointment was with one of addysons autonomic dysfunction Drs. She agreed we are on the right path and have already tried all theContinue reading “Tree drive drop off and Drs appointments”

Neurology appointment today = update

Today addyson had her neurology follow up. She’s been pretty stable on her anti seizure meds so now the discussion is should we repeat her eeg and then determine if we can try to slowly (very slowly) taper down on her keppra. This is so scary to Randy and I because like the neurologist saidContinue reading “Neurology appointment today = update”

Long day (nerve conduction test, EMG, punch biopsy & blood work).

Super long day today at children’s. But we got a lot done. However the testing we did today was not pleasant at all. But we did it. Today consisted of nerve conduction testing, an EMG, punch biopsies & blood work. The nerve conduction test and EMG was done on her right arm and leg. TheContinue reading “Long day (nerve conduction test, EMG, punch biopsy & blood work).”

Cardiology, infusion and swim meet

Another busy day. It started with addysons cardiology appointment. We found out her echo was abnormal as her aortic root is enlarged. It cannot shrink back however we need everyone to hope, pray, whatever it is that you believe in. We need addysons aortic root enlightenment to stay under 3.0. Hers is close to theContinue reading “Cardiology, infusion and swim meet”