August: An Overdue Update
I sit down at the desk in our room to type an update so often. Children occupied- most often sleeping- fingers tapping, and I can just never get the words out. It is still so incredibly difficult to put words to this journey. To explain how our life feels so normal and yet so abnormal all at the same time. Brock is honestly doing so well- undoubtedly better than we were told to expect. I still wonder what is/was realistic in doctors’ minds for his growth and development. But, I can read the statistics. 20% of babies with meningitis don’t make it, 50% of those that do survive go on to suffer significantly with vision, hearing, and have learning disabilities, 40% require a shunt. He is so very happy and so easy going. We still see physical therapy, occupational therapy, and speech therapy often. We had let go of speech, and thoroughly enjoyed eating without someone watching every motion of his body, mouth, and tongue, but Brock has shown a need to pick back up therapists in that department. Brock has also been the lucky recipient of the stomach bug- twice…so that gives you an idea of what his immune system is still like. He also seems to have at least 1 cold a month, and we ended up in the ER with high fever and a double ear infection the only time we got enough guts to take a trip. He seems to catch everything and honestly, living in a bubble is not enticing to me, but blowing up at people who put their fingers in his mouth like a chew toy is. At his 6 month appointment, our pediatrician suggested seeing several additional specialists, but said nothing was pressing or would really alter his treatment, so I choose to steer clear of receiving any more potentially bad news. Fast forward almost three months, we are in the same position- so in the next three weeks we will be having another swallow study done, and will be going to a pediatric ophthalmologist and back to the audiologist. We will also see someone to make some foot splints (I don’t know what else to call them) that will make him stop curling his toes so that he will learn to stand up and balance. On top of all that, we go back to neurology, and then have another MRI sequence before seeing neurosurgery on September 12th. At his last head circumference check, Brock had jumped up onto another growth curve, so obviously we are more and more aware that the VP Shunt is quite possibly in Brock’s future. It’s funny (ok, not really) to hear them talk about a shunt like it’s the most minor procedure- it’s brain surgery, it’s another hospital stay, it’s anesthesia, and the word death is on the consent form. Obviously that risk is low- but so was him getting GBS meningitis at 11 days old.[...]
