Sfn and qsart testing

Today’s appointment was an appointment addysons neurologist wanted us to get back in January but today was the first available appointment.  The neuromuscular Dr noted some abnormal sensory findings in regards to her feelings in her legs. She agrees we should proceed with the testing for both small fiber neuropathy as well as large fiberContinue reading “Sfn and qsart testing”

1st appt this set

First appointment of this set went as expected. Rheumatology changed dosage on addysons fever meds since in 6 months she’s had 6 fever episodes. He is hopeful this bump up will stop the flares. If it doesn’t work then we are to call and discuss another option. Tomorrow is the big day- aadp clinic. HoursContinue reading “1st appt this set”

Recap on last few weeks

The kids got their report cards. I’m very proud of both of them. Ethen has faced a lot of issues so far this school year but his grades are good. He’s even in advanced courses. Addyson has always been grade levels behind due to all her missed school time due to surgeries and medical appointments.Continue reading “Recap on last few weeks”

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”

Best dr = great phone call

Today I received a phone call from Addysons dr down in ga. He wanted to touch base to see how things are going. He always talks to me for a good hr reviewing all her symptoms in detail. He said that he can’t image the amount of stressors our family has had to face dueContinue reading “Best dr = great phone call”

Loving the new dr on our team

I cannot express how grateful we are for the new dr on Addysons team. He is amazing. He checks in on her all the time. He shuts down his clinic so he has time to see her without being rushed. He has the best bedside manner and truly cares about his patients and their families.Continue reading “Loving the new dr on our team”