Addysons always one step forward and two steps back

Today we found out that we will be going forward with the sleep study. The dr is confident that Addyson us some type of sleep disorder. With that being said she’s hoping that starting addyson on iron infusions for her dangerously low ferritin levels will prove helpful for sleep, memory, attention, energy levels and more.Continue reading “Addysons always one step forward and two steps back”

Geneticist and surgical follow up

An X-ray and two appointments today (geneticist and surgeon). The geneticist went well. We have a new one. Our prior one left. I like this new one though. She seems good. We discussed a lot (whole genome testing, reanalyzing her whole exome sequencing, doing genetics on both grandfathers who she inherited genes from and weContinue reading “Geneticist and surgical follow up”

The weight is heavy today

The weight of Addyson’s illness is winning today. I’m struggling. She gets one of her meds from a dr in GA. (No issue there) Except that it expired yesterday, so the school can no longer give it to her and she can’t make it through a day without it. We found out that MD pharmaciesContinue reading “The weight is heavy today”

Motility & hearing update

Today Addyson had her follow up with her motility dr. This appointment always worries me. He can be stubborn. I believe him and believe he has Addysons best interest at heart but sometimes we just don’t see eye to eye. Today he listened. He agreed that if Kennedy Krieger’s feeding clinic had a recommendation thenContinue reading “Motility & hearing update”

Clinic day

Today we had gi clinic at chop. It went well. Overall I’m pleased with where we are. We discussed her weight. We are going to do a three day food log and follow up with nutrition on a better plan. we did day 1 today so 2 days to go. Bowel regimen: we are goingContinue reading “Clinic day”

Busy 2 days

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. SurgicalContinue reading “Busy 2 days”

And the appointment went….

So today we waited and waited for Addysons gi to show up for our appointment. He’s great and really good but that often means we sit and wait hrs later than our appointment time for him to show up. But the good news is he never rushes us. He takes an hour or more withContinue reading “And the appointment went….”

Tomorrow’s appointment

Addyson has an appointment tomorrow that will hopefully go the way we want it to go. If so, it will be a pretty big surgery but hopefully get her on a better track. Things have been stable. Her ostomy is functioning. Gi wise she’s doing good. Seizures are controlled. Pots is stable (her new doctorContinue reading “Tomorrow’s appointment”

Update

AADP: overall was good. We have to redo her lab work next week because some of her lab levels were low so they want to recheck them. We still need her bp to come up so we are monitoring that closely. If her electrolytes don’t improve with the next blood drawl we will have toContinue reading “Update”

Telemed appointment

So today we had a telemed appointment with Addysons gi motility dr. He had us concerned because he called two days ago and said we needed to meet to discuss her lab work. We had not yet see her lab results so we were unsure of what we needed to discuss. Anyway ….turns out he’sContinue reading “Telemed appointment”