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
It’s been a rough week! Charlie had an alternative communication evaluation on Monday. This is where he met with a speech and language therapist to determine the best equipment in order for Charlie to communicate. I was SO excited for this appointment…thinking finally, we are going to move forward with getting an eye gaze system … More Eye Surgery x6 (I think)
Thank YOU ALL for your prayers because Charlie has been APPROVED to trial an experimental drug!!! I am in shock. This is amazing news. Just to refresh your memory from my last blog post, this drug (BYL719) is a breast cancer drug, but it has not been approved by the FDA for anything at this … More APPROVED
Charlie’s scoliosis has gotten bad; his curve is at 54-degrees. Doctors said they consider fusing rods in your back when the curve is between 50-60-degrees. Here’s how we ended up here… May 1: had x-rays, went to orthopedic surgeon. Charlie has an s-shaped curve and at the time one curve was around 30-degrees. The other … More Scoliosis and LOTS of Prayers
It has been 3 months since my last blog. I thought life would slow down (slightly) once Charlie started school, but I was wrong. It was the opposite. This boy keeps quite a schedule: Monday: School 8:10-10:40am (20-30min drive), nap, OT at 2:15pm Tuesday: School 8:10-10:40am, nap, PT at 3:15pm Wednesday: Swimming Class with Grandpa, … More Bifocals, School and Mom’s New Career
Charlie had a successful eye surgery on July 27. His glaucoma specialist performed a laser surgery on Charlie’s right eye to kill some of the fluid that causes pressure (glaucoma). He had planned on covering up some exposed tissue at the top of Charlie’s eye, but once he got in there it was not as … More School, Eye Surgery & Giggles
I’ve been struggling emotionally for the last couple of months. I used to think being a stay at home mom would be amazing . Tough? Yes. But still amazing. Admittedly, in many aspects, it is. And for the record I count my blessings daily that I have this option. My biggest complaint is that I … More I see you Mama
We have spent the last couple of months trying to schedule Charlie’s cataract surgery. For months, Charlie’s ophthalmologist in Green Bay has been saying that Charlie needs cataract surgery in his right eye. Once we felt the pressure in his eye was stable (from glaucoma), the ophthalmologist referred us to Milwaukee for surgery. We were … More More Eye Surgery
Ten years ago, in 2008, I had been working as a reporter for TODAY’s TMJ4 in Milwaukee. I met an individual named Kevin Paluch. He was genuine, selfless and kind. At the time he was president of Geneva National Foundation, a non-profit raising money for organizations within Walworth County that support those with special needs. … More School Dilemma: Public vs. Special Needs
Charlie is now 3-year’s old! He turned 3 on March 12. We celebrated in Orange County, CA during our two-week vacation. We booked an Airbnb in Corona Del Mar for Al’s parents, Al, Charlie & me. Al can work remotely so he worked during the day while the rest of us embraced the sunny weather. … More Charlie’s Dog, Heart and Thyroid
