Unhealthy Right Eye

Charlie’s right eye has been an ongoing battle, one that we unfortunately seem to be losing. Of all of his challenges, I’ve cried the most over news about his eyes. I think that is because i wasn’t prepared for bad news. Jan ‘16 – I learned he was extremely nearsighted and has glaucoma in his … More Unhealthy Right Eye

Trying SO Hard

No news is good news, right? Well, that's the reason for my lack of blogging. I don't have much new news to share about Charlie other than he has been trying SO hard at therapy lately. He goes to therapy four days a week: speech on Monday, physical therapy on land on Tuesday, occupational therapy … More Trying SO Hard

Legally Blind

A lot has happened since my last update. Late April Charlie’s right eye became really red and irritated. That’s the eye that has a drainage tube/shunt to relieve pressure from glaucoma. We got him into our Green Bay ophthalmologist right away. Thankfully the pressure in his eye was stable, but they were concerned about the … More Legally Blind

“Charlie Syndrome”

Early on, Charlie’s geneticist and several doctors mentioned that Charlie could possibly have “Charlie Syndrome” — a genetic disorder so rare that it’s never been reported until Charlie. Well…fast forward 1.5yrs & it appears that they’re right. It appears that Charlie has “Charlie Syndrome.” You’re probably asking yourself “wait, do they have a diagnosis?” The … More “Charlie Syndrome”


Charlie underwent a pyloroplasty (to open his stomach for food to pass) and a Nissen fundoplication (to close the esophagus & stop reflux from coming up) on Monday. Following surgery, Charlie’s new neurologist ordered an EMG to test his nerves and muscles. He went back for surgery at 9am and I didn’t get to see … More Surgery

Our 19 Pounder

On January 13, Charlie underwent another balloon dilatation and round of Botox into the pyloric sphincter.  After the procedure I met Charlie and his nurse in the recovery room. She was very interested in learning about him. I mentioned how concerned we are not having a diagnosis — not knowing what the future holds. She … More Our 19 Pounder

Comfort and Joy

While driving home from the hospital Thursday, we listened to Holiday Traditions, the Christmas station on Sirius XM radio. God Rest Ye Merry Gentlemen came on. I sang to Charlie (because he thinks it’s funny when I sing & dance). My Christmas wish is to share tidings of comfort and joy for Charlie in 2017. … More Comfort and Joy

Another Letdown

Charlie got his GJ tube on Thursday. Thankfully the radiologist was able to change out his G tube (gastric- which goes into his stomach) with a GJ (gastric jejunum -which goes into small intestine) without sedating him. I went into the room and held Charlie’s arms while the radiologist performed the change. Charlie was so … More Another Letdown