Neurology appointment follow up

Addyson saw her neurologist today. We love him. He understands her type of epilepsy well. Overall it was a good appointment. He is going to switch her keppra to an extended release dose to try and get better coverage so we won’t get breakthrough seizures. He would rather do that than up her dose. IContinue reading “Neurology appointment follow up”

Neuropsych results

Today we got Addyson’s neuropsych results. Nothing surprising to us. She has been diagnosed with adhd, anxiety and dycalculia (a math learning disability). Dyscalculia: An Overview Yesterday we toured spartek academy for Ethen. He will shadow there tomorrow. Fingers crossed that he has a great day. He will also shadow at bethel on Friday andContinue reading “Neuropsych results”

Regroup

Ethen did not get into the school that we thought was a good fit. We will regroup and figure out another plan. 😞 just feeling very defeated. Addysons sleep study showed a sleep disorder. Basically she isn’t getting into REM sleep and she’s having some central apnea spells because her brain is not signaling toContinue reading “Regroup”

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”

Mito team and sleep study

Busy busy day. We went from Addysons mito appointment to her sleep study. We got lots covered during Addysons mito appointment. • ct Ordered for head • kidney u/s ordered • whole genome sequencing ordered • new cooling vest ordered • discussion on picc line vs port • discussed labs (infusions beginning soon) some labsContinue reading “Mito team and sleep study”