Uncategorized – Beaming with hope

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”

NIH UDN

Addyson was not accepted into NIH’s UDN. We are not completely shocked However we had hoped. They pretty much stated that they agree with her mito diagnosis and that they would be doing everything we are already doing so they don’t see where they could offer any other treatment options. it’s nice knowing we areContinue reading “NIH UDN”

Christmas surprise

We gifted the kids a memory this year. A surprise stay at the great Wolfe lodge in Arizona along with a trip to the four corners and a one day trip to Disneyland. They were so excited!! We started Christmas morning at 5am and we finally made it to the hotel at 2am the nextContinue reading “Christmas surprise”

Finally!!!!

We found Ethen’s new school. He’s excited. We’re excited. The staff is excited. I’m beyond grateful that we found a place that feels like a good fit. Addysons pediatrician checked in on her today. He and I were talking and he said I saw addyson and Ethen got vaccinated. He said I just need toContinue reading “Finally!!!!”

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”

Sleep study results

Addysons sleep study results are in. She has been diagnosed with a sleep disorder (a limb movement disorder and non obstructive sleep apnea). We are waiting to hear more from the team on next steps From what we know at this point her apnea is not obstructive. It’s being caused by incorrect signaling from herContinue reading “Sleep study 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”

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”