Tuesday, October 18, 2022

No News=Good News

Nothing much happening here so we are greatly relieved. A perfectly normal fall. Byron is doing well in school.  We continue to wean the seizure medications with the goal to be off them entirely next month. Byron ran a couple of miles the other day and felt pretty good doing it  🏃

New 10th grade school pic!

Tuesday, September 6, 2022

First Day of 10th grade

Byron returns to school on this rain drenched morning.  What a summer it’s been! When I asked Byron if the surgery was the strongest memory of the summer, (hoping it wasn’t) he said, “Mom, the surgery was a blip”.  We’ll it certainly wasn’t a blip for me 🙄😵‍💫🙁.  He told me his favorite experience of the summer was the 4th of July at his Aunt Ellen and Uncle Steve’s lake house in North Carolina.  Yes there were some great memories too! 

Friday, August 26, 2022

NYC Trip for Byron

 It’s the end of a looooong summer for all of us. We are celebrating the end of Byron’s surgical journey. All of the things Byron loves are on the docket; soup dumplings, Broadway with Dear Evan Hanson, time with Uncle Jeff and Alessia, watching his brother Ryan complete a 10k in Central Park, The Stranger Things experience and more…

Friday, August 19, 2022

Fever Free for Two Days

 The great news is that Byron’s fevers seem to be gone!  Now the real healing can begin. He’s pretty tired but in most ways he’s back to himself. 

Monday, August 15, 2022

Very mild fevers today

 Maybe, just maybe we are rounding the bend with the fevers. Down to 100 with no Tylenol. Byron is much more like his old self. Energetic, loud 😂 funny. All in all a good day. 

Sunday, August 14, 2022

Fevers persist but he’s better

 It’s very strange how Byron is still experiencing fevers almost all day ranging from 100-101.9. We are really hoping they abate soon. But he’s generally feeling much better. 

Taken this evening 

Thursday, August 11, 2022


 Today Bob took Byron to NYC to get the 60+ staples removed and to meet with Byron's epilepsy specialist. The removal went well with no pain (PHEW) and we have a slow weaning plan to get Byron off of the seizure medicine.  I think the weaning schedule is too slow but I always do. He is on such a huge dose that I really want him to be finished.  And, if the surgery was a success and there are no more seizures, we will know it once the medicines are removed.  

The only minor hiccup is that he is still having fevers.  The surgeon did not seem too worried about it. He said that they should level off soon.  Hopefully the antibiotics will help. 

Byrons attitude remains excellent.  He has never complained except during the first few days. He takes this challenge in stride like most things.  Truly a remarkable human being.  Even being his mom, I'm not shy saying that :)

Sent the following letter off to the school today from the doctor.