September has always been special to us, but it is quickly becoming our favorite month of year! September is hydrocephalus awareness month and we would love to have you join us Saturday, September 8th in Redondo Beach for the annual WALK to END HYDROCEPHALUS. Sign up under the 'Get Involved' tab and join Surf 4 Shea!
Over the past few months, we have been able to connect to both our CHOC and Hydrocephalus Association communities through CHOC walk and HA Connect.
This was our first CHOC walk experience. It was amazing and at times overwhelming seeing just how much CHOC impacts and continues to serve our community. We owe so much to the CHOC staff and physicians who have been and will continue to be by our side for quite some time. The true spectacle was watching Shea take it all in, growing particularly fond of Disney characters.
We recently attended HA Connect, the National Conference on Hydrocephalus. This annual event is held all over the country and this year just so happened to be held just down the street in Newport Beach. As eager, first time attendees, we bought all access 3 day passes with lofty goals of attending lectures and Q + A sessions to learn as much as possible about Shea's condition. We must admit we did not get to as many sessions as initially hoped to; however we came away with several truths worth sharing.
Truth #1: We are very well taken care of at CHOC. After hearing other families talk and ask questions, you quickly learn that Shea has the best treatment from one of the best neurosurgeons in the world. Shea's neurosurgeon, Dr. Michael Muhonen, was a lecturer and helped kick off the entire weekend. He is clearly a leader in his specialty and we are so lucky to have him in our lives, walking and educating us along the way. Erin and I could have easily answered most of the Q + A session we attended for young families and we owe that to CHOC and Dr. Muhonen. We are in good hands.
Truth #2: Hydrocephalus research and treatment is so young. It is a remarkable and emotional feeling sitting in a room full of world leading specialists discussing a condition that your 2 year old son is living with and most sentences finish with " .... we just don't know." We attended a 90 minute session on research and treatment and the word 'cure' does not get mentioned. It is hard not to be discouraged. It is hard for researchers to look across patients and find trends when treatment is not even uniform across the board. However with that being said, there were some very exciting avenues that are being explored that could change Shea's life dramatically. One of the items is a medication being developed to slow down fluid production during shunt failure. With less fluid building up applying pressure on Shea's brain, the window between shunt failure and emergency brain surgery would extend.
Truth #3: Shea is currently thriving and we couldn't be happier for him or us. Unfortunately, it is far too noticeable how much he is thriving among those living with hydrocephalus. It is even scarier thinking about how fast that could all change. There is not a day that goes by that we don't think about hydrocephalus and Shea's shunt. We continue to count our blessings each and every day.