As you may remember from my last post, we had concerns that Ronan may have hydrocephalus, which is fluid on the brain. His head size had dramatically grown between his 12 month and 15 month appointments. We were very worried on many fronts - we needed to get in at CHLA for a high res MRI as soon as possible, so that we would potentially have time to schedule a surgery before Christmas. Months ago, I scheduled a cardio-genetics at Cincinnati Children's Hospital on December 21st. We really wanted to get Ronan to that appointment, and of course, Christmas.
Ronan went in for his high res MRI on the 18th. We were relieved to find out that Ronan simply has a big head :) No fluid on his brain. Sometimes kids can grow in one area first, and then the other areas catch up. Here's to hoping his body catches up to his 96% head! If that happens, we will be purchasing a very, very expensive bottle of champagne.
|Ronan getting his sedated echo|
Paul and I went into the appointment not really knowing what to expect. Our cardiologist had started to talk to us about what a heart in that condition would mean long term. We were scared. The sedated echo gave doctors a much better view of his heart than we expected, and best yet, the news was good. We have never had such an optimistic and uplifting appointment as that one. Dr. B told us that Ronan's repair was "beautiful", and that he may not need to have another open heart surgery until he was 15, and at that point it could be a cath procedure. Dr. B had no concerns over his right ventricle, and felt that his function was good.
After the appointment, Paul, Ronan, and I had the privilege of having lunch with the parents of a little boy, Connor, who is 12 weeks old and is recently diagnosed with CHARGE syndrome. It was such an incredible experience for us. We remember too well those early months, and the time when we honestly wondered how we would ever a happy family. I remember wondering how we would ever manage the frenzied pace of our lives. Now, I could not be happier. This journey feels like a marathon, and there are certainly days when I wonder if we can keep this up, but it feels like a marathon we can run together. I hope that we were able to convey that sentiment to Nikki and Josh, and to show them how different things can be in just a few months or a year. This was the best thing I did all year, hands down.
This holiday season has been one filled with hope for us. Hope that Ronan is on his way to a big growth spurt. Hope that Ronan's heart continues to impress his cardiologists. And hope that we tried to share with other parents early in their CHARGE journey.