We are in the middle of the COVID-19 pandemic, going into week 5 of quarantine. It is a frightening time for many; and beyond the fear of getting sick or losing a loved one to this novel virus, is the struggle with this new normal. A new normal that involves working a full-time job while … More Welcome to our World
I had always wanted to try yoga, but never got around to it. My friend Kari Helms invited me to a yoga class two years ago. She told me that it’s pretty low key and fine if you’re a beginner. I met Kari shortly after moving to Green Bay because her daughter is the same age as … More Defeated
As I embark on a new year and new decade, I think back to the last decade. 2010 began with Kurt (my dog) and me moving into a new apartment in Wauwatosa (above Flower Lady in the village). I had a lot of hope for the future and faith in God that he would guide … More New Year, New Decade: Hope and Faith
I was working for Mequon-Thiensville School District when I had Charlie and started this journey. During that time I had lunch with a parent whose son has autism and she told me – thanks to my son, I don’t compete with other parents and their kids. She said I’d like to think that I wouldn’t … More Trial Drug: 6 Month Follow Up
The most exciting thing we’ve experienced since our last blog is having Bo (or BoBo as we call him) visit for a long weekend. Bo is oh so sweet and Charlie loved having him. Bo was 3.5 months old when he came to visit so he was not fully potty trained and he had been … More Therapy Changes
It’s really hard to describe life with a special needs child. No one can truly understand what it’s like unless they have a special needs child. I describe it as constantly treading water. Then again, having children regardless of challenges is stressful and I’m sure parents of typical kids also feel like they’re treading water most days.That’s why the proverbial village is oh so important! … More It Takes a Village
We constantly tell Charlie he’s a big boy and should act like a big boy (i.e., no crying when mom walks away). Now our actions met our words as Charlie has his own big boy bed and big boy room. He’s gotten too big for the crib, plus it’s hard to lift him over the … More Big Boy Charlie
Summer has come & (almost) gone since my last blog post around Memorial Day weekend. We’ve been busy enjoying our warm Wisconsin summer. Charlie started the trial drug (Alpelisib/BYL719) Saturday of Memorial Day weekend. Three months later I am happy to share that no news is good news. He hasn’t shown any adverse side effects. … More No News is Good News
It’s here! The trial drug we’ve been praying for is in Milwaukee. Charlie is scheduled to start it Saturday! I won’t feel 100 percent confident until it’s in our hands because this has been a bit of a roller coaster. The drug is an unapproved breast cancer drug called BYL719. Here’s a link to some information regarding why someone … More Trial Drug BEGINS
We are 2.5 weeks out from Charlie’s eye surgery. So far, so good! He handles surgery like a champ. After all, this was his 6th or 7th eye surgery. A few hours after inserting the new drainage tube, Charlie was laughing and being himself. The next day we drove down to Milwaukee for a follow-up … More Dog and Drug Trial Update
