Today was Harper’s big follow-up at Duke. She had three appointments at the children’s hospital- neurology, neurosurgery, and ENT. We visited with neuro first, and both her neurologist and neurosurgeon were very impressed with her progress. While her most recent MRI showed areas of brain damage, fluid retention, and cysts, it is all stable. There is no significant bulging of the skull and developmentally she is steadily improving. They attribute this to her young age- because she was so young when all of this damage took place, her brain was able to rewire itself to fire differently, causing less delay thus far.
From the ENT… Harper’s laryngomalacia is continuing to improve and we barely hear the noisy breathing anymore. Her reflux is still acting up, so we are continuing the reflux meds and trying some cereal. The ENT will continue to watch her, keeping an eye on her breathing, her reflux, and her speech patterns as she gets older.
Over the next six weeks we will start weaning Harper off of her seizure medicine. She has been on it all of her life so far, so it’s a little nerve-racking on our end as we watch to see if she will have an issue with seizures. We go back to Duke in three months to follow up with the ENT again, and to have an MRI under sedation. In the meantime, we will just continue to watch her and continue working with her therapists at home.
The overall summary- God is good and our girl is a miracle that no doctor or medical book can explain. Yes, there are still issues and uncertainties, and as a parent nothing is harder than holding your baby and not knowing what could happen with her at any given time. But she is amazingly ahead of what her doctors ever hoped for her, and we know we have been blessed far more than we deserve. So for now, we will continue to watch and observe and monitor, and pray that God continues with the miracles!