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
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
