So far this week Sophie has seen her ENT and Pulmonologist. They were both so happy to see us and surprised with how much she has grown, almost four inches in just one year. And they were very pleased with her cognitive progress too. When we left Florida a year ago Sophie was not yet walking so when they see her walking it is a very powerful moment.
The ENT was very pleased with how “well” she looks, he said this is by far the healthiest she has ever looked. That is always great to hear. He was sad that the sinus disease had taken such a toll on Sophie but was not surprised; before we moved we had been discussing another possible surgery so the idea was very present. He was very happy with the care Sophie received at UNC Chapel Hill and was also very happy they suggested to use nasal irrigation with the Bactroban (cream antibiotic) as a daily preventative treatment. Since the Bactroban rinse is typically used with adults it had not occurred to him in the past but as he said…”Sophie requires us to think out of the box”. We will follow back with him in a few months after another sedated ABR is performed. I wanted to wait at least six months before sedating Sophie again since she was under anesthesia for so long during her sinus surgery in April.
The Pulmonologist was also very pleased at how well Sophie looks; he even hugged he was very happy to see us back. And Patty his nurse who was ALWAYS so positive with Sophie was so happy to see her! The doctor knew exactly what PCD is and was able to explain it to my husband better than I could. It’s critical to keep the mucous from sticking to the bronchial so running, jumping, coughing, nebulizer treatments and chest PT are very important in her day-to-day routines. He also wants to have her fitted with a special vest that provides vibration and is adjusted to her size as she grows, this price tag for this vest…ten thousand dollars! Wow….crazy isn’t it. UNC had not sent over the information on Sophie’s diagnosis but instead of waiting the doctor was going to call Dr. Leigh and speak with her. I love how dedicated Sophie’s doctors are. He did say the progression of the disease is much slower than with Cystic Fibrosis but we must keep the bronchial’s clear to help slow down deterioration. Sadly the deterioration is inevitable but hopefully we can slow it down.
I feel very comfortable with the doctors abilities to treat Sophie and I feel so very blessed that they care for Sophie so much. There are alot of negative doctors out there but I believe there are more good ones. We have been so very lucky to have been blessed with so many good doctors they totally make up for negative ones we have had to experience.