Our HH journey began almost one year ago to the day. January 3rd, 2013. Looking over this past year we have experienced some difficult times. But as we were leaving our pediatrician’s office for our yearly check-up, Dr. Bucci wished us a good new year. I responded, “Hopefully it will be better than this year!.” He warmly replied “Overall, I think you had an incredible year.” That perspective really helped me to see what a great year it really had been.
Eli had two brain surgeries this year and is doing awesome! We still have a long way to go but for everything he has experienced this past year, it is pretty amazing to see Eli’s progress. He is so resilient and handles all his doctors appointments and hospitalizations so well. I am proud of his ability to deal with uncomfortable tests, taking so much medicine, experiences so many seizures, disruptions to his routines, and traveling so much. We are lucky to experience times of normalcy, like cooking breakfast together, going on hikes, reading his favorite books, and trying new experiences like iceskating. Seeing the joy on his face in these little moments fills me with happiness.
We were so fortunate to have our neurologist in Baltimore, Dr. Shafrir, recognize Eli’s funny laugh as gelastic seizures and a symptom of HH. He was very open to having us research various ways to help treat Eli and has be so helpful throughout this year. We are amazed with our Texas doctors -grateful that Dr. Wilfong came up with a new way to treat HH through laser ablation and Dr. Curry to bravely try this surgery for HH in attempts to help children have minimal surgery complications and expedite healing time.
We were humbled by the kind words, support, and generosity of our friends, family, Govan’s Presbyterian Preschool Community, the Danzations family, and strangers. Also, the understanding our employers have shown eased some of stresses. Everyone’s support touched us and helped us more than you know.
Traveling is one of our favorite things! We have been able to explore Houston on our many visits. Eli’s favorite place is the children’s museum, but we’ve also been to the aquarium and the zoo. We visited the beach in Galveston. Eli has enjoyed going to some western shops and dressing like a cowboy. We hope to drive to Texas for our final check-up this summer and are looking forward to lots of fun adventures along the way!
Through out the year we have talked to and met some great families who have been affected by HH. We have been inspired by their courage to try new ways to help their children live happy and normal lives.
Eli was able to spend so much time with far away family more often than the usual holidays! They took time off from their own busy lives to came to Baltimore offering us help after both surgeries. Grandparents, aunts, cousins all came to play, cook meals, babysit, and love Eli!
We are so happy when newly diagnosed families reach out to us through our Facebook page or website. We love sharing our experiences in hopes to pass on the support we have received through our HH adventure!
It has been quite a year and these are just some of the positive aspects that grew out of a difficult diagnosis.
Here’s for a happy and healthy 2014!