Everyone send their good vibes please. We got a call from school today that’s addy’s bp was 125/110 and she was dizzy. Then it dropped to 80/56 and she had a headache. She spent the rest of the day with the nurse. We reached out to cardiology and discussed everything. We discussed her bp, herContinue reading “Send the Good vibes”
Category Archives: Uncategorized
Infusion # who knows 😂
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 😂”
Todays Appt
Today we had Surgical follow up and Rheumatology follow up Surgical follow up went as expected. X-ray showed an extensive amount of trapped air. I mean enough that it’s pushing up on her diaphragm. We will begin Venting more. We do this often, but not scheduled times, we will try doing it 3-4x a dayContinue reading “Todays Appt”
Upcoming Appts
The next few weeks are crazy. We have lots of appointment coming up for Addy. We have at least one a week for the next 6 weeks, and some weeks have two. Plus the kids have a dentist appt, and orthodontics appt and I have a neurology appt to try and get my migraines controlled.Continue reading “Upcoming Appts”
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).”
GW signing day
The kids love their GW teams. Navigating ethens diagnoses has not always been easy. When he was younger, he spent hours per week at ot, pt, aquatic pt and hippo therapy. We have gone through years of dmo suits, smo bracing and more. He has excelled in so many ways. However he still very muchContinue reading “GW signing day”
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”
Beaming with hope 