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”

Surgery

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

Feeling Defeated

Before I share why I feel defeated, I would like to add another pet peeve. Think of it as Melissa’s 12 days of pet peeves leading up to Christmas 😘  My son is sick; medically fragile. He is seen regularly by some incredibly talented doctors. We also spent a week at Mayo Clinic for a … More Feeling Defeated

Is he sleeping?

This Charlie update begins with my newest pet peeve: “Is he sleeping?” It’s a question that has started making me cringe. It’s a logical question that anyone should be allowed to ask and still can; however, don’t be surprised if I roll my eyes, quickly exclaim “NO!” I didn’t realize how often I am asked … More Is he sleeping?