Another busy day. Addyson 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”
Category Archives: Uncategorized
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”
More appointments and findings
Busy week again. I know it seems to be the norm lately, but the past few weeks just seem extra busy. We just have had a lot of appointments lately. Yesterday’s rheumatology appointment went well. Pretty much as expected. We discussed the pros and cons of keeping her on an immunosuppressent med, but agreed it’sContinue reading “More appointments and findings”
Rheumatology
Addysom had a busy day today.. She had pt, a dentist appointment and then off to Hopkins for a rheumatology appointment and 8vials of blood work. Got her labs back, multiple ones are abnormal. I’m sure rheumatologist will get back to me soon, especially about a few in particular ones. Overall the appointment went well.Continue reading “Rheumatology”
Rough day w a new Dr
We saw a new genetics Dr today and we weren’t a fan. I get what she was trying to say but I feel like she said it all wrong. She told us addyson has severe autonomic dysfunction and we need to accept that and move on w living life. I feel like we have doneContinue reading “Rough day w a new Dr”
Rough week
It’s so hard. You look at pictures and it looks like she’s had a great week. However it’s been a week of struggle. Her gi system is not working with us at all this week. Every day has been a struggle of what to feed her, when to feed her, when to pump, when toContinue reading “Rough week”
Surgical follow up
Today we had addysons follow up with her surgeon. I know it’s odd to still have a surgeon one year post her most recent surgery, however he will follow her for years because he’s also the one who will do her next surgery, which will most likely be her pectus excavatum repair. Today we discussedContinue reading “Surgical follow up”
Beaming with hope 