Plan forward

We spoke to addysons motility gi Dr tonight. We have a plan going forward for testing next month when she flares. He also said every xray during a flare has shown a functional ileus. He wants to help us get better control on those. We don’t want to be an ileus mode every month. SoContinue reading “Plan forward”

Another day at chop

Today we saw opthamology, nutrition and gi. Opthamology said her eye sight is good… As far as the tracking issue since her scooter incident, we should see the eye tracking Dr so that’s another appointment. Nutritionist is pleased with what we’re doing and wants her to stay on her feeds, no talk of decreasing anytimeContinue reading “Another day at chop”

Pediatrician check up

Why does every one of addysons doctors say “she’s one that sticks with me and makes me think”? They all also say man, she’s still full of spunk even years later. Let her keep that sass it makes her the fighter that she is. Today we saw her pediatrican and we talked through everything. WeContinue reading “Pediatrician check up”

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”

Whole Genome Sequencing

Addysons Whole Genome Sequencing came back after some mix ups. Her blood work from today also came back abnormal In her genome: They refound her MEFV Gene and her CHRNB2 Gene. They also found another gene: UGT1A1 *1/*28. The ugt1a1 gene means that she is a Intermediate Metabolizer. We were told that this means thatContinue reading “Whole Genome Sequencing”

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”

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….”