Today is our last day of addysons wish trip, we head home tomorrow. It has been an amazing trip with lots of memories.. Below are a few highlights. Addyson goes through so much medically so to have a week to make these memories and focus on all the fun things has been amazing.
Tag Archives: seizures epilepsy
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”
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”
Finally
We have been waiting since Oct 2nd for addyson’s iron infusions to get scheduled. Got a call tonight that the scheduler will call us tomorrow for a date. They said either late January or early February!!!!
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”
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”
Milestone!
Today miss Addyson went into the mri (brain mri) without me in the room. She was hesitant at first but she rocked it. She walked in with the tech as I sat in the waiting area. I am super proud of her. we were able to do it without sedation as planned! She’s had MRIsContinue reading “Milestone!”
Beaming with hope 