This is a follow up blog to #32 – Nerve Freezing. After that initial consultation appointment, the actual procedure needed to be scheduled and planned. During that initial consultation I was very clear about William’s airway issues and it was more than evident that William can’t handle the pain. It was discussed at length that […]
Nerve Freezing…also known as Cryoneurotomy Going to appointments has become second nature to me. I’m used to all the questions, I go in prepared with my own questions and William handles it all pretty well for the most part. Recently, we had what I thought was a consultation appointment. In my experience to date, a
Our Current Team In my last blog I touched on hiring and saying goodbye and what that process looks and feels like. But the daily emotions of gratitude, acceptance, love, overwhelm (in a good way), fear, reality, maybe a bit of shame, little embarrassment, pride and excitement are just the tip of the iceberg when
Our team is one of the most important aspects of our family’s life. I’ve written about our team before but there have been some changes so I thought it was time to share a bit more about what the process looks and feels like when we are welcoming new people or saying goodbye to established
Bear and I will be the first to admit that running our world requires help. In order to function we rely on our five care staff for William but beyond that there is a team of several invested medical professionals, family and friends. We choose our friends carefully because we feel most comfortable around people
Before William was born, we lost our daughter Hanna and were told that couples who experience the loss of a child often struggle to stay together. Then William was born and we were faced with the question – “You have two options, we can make your boy comfortable and let him go or we can
Routine is big in our world because William relies on it. Medication administration, meals, sleep, down time, school time, physio time, pool time and standing frame time along with appointments and normal home duties are all pretty well scheduled. Within the routine, there are special moments every day that make my day. The morning greeting.
William has used an eye gaze since he was about 5 years old. Speech therapy itself started when William was very young. We used sign language, we read books, we were always talking to him, singing and listening to music, we would mimic his noises so he could see our mouths move while making different
William’s world is all-consuming. For 11 years it’s basically been my full-time gig. Actually, I think it will always be my full-time gig but I’m realizing that I can have other things in my life that provide personal reward and confidence that aren’t dependant on anyone else. I’ve written about my journey with fitness and
This 4 letter word has more power than I’d like to admit. It rules our world! William’s tone is relentless. It fluctuates from hour to hour despite medications and well-planned routines. Everything impacts his tone – excitement, pain, hunger or him being too full, boredom, frustration, fatigue or the water being too hot or too