Wanderlust…Traveling the World With Medically Complex Children

My name is Jaime… pronounced “Jay-me”… not to be confused with the Spanish male name “Hi-may.” I often get confused looks from the locals when they see my name written or check the name on my credit card. Travel has always been my friend. If I’m in one place for too long I tend to get restless. By profession, I often had travel built into my schedule taking me to many parts of the United States and the world. My longing for knowledge, adventure and seeing new places led me to a place where I met my awesome husband, Danny. One of my favorite things about him was that he also wanted to see the world. We honeymooned in Belize, traveled to Nicaragua and talked of someday living abroad. 

After our daughter Penny was born our world in a sense was turned upside down. At 5 months Penny was diagnosed with a very rare genetic liver condition called Glycogen Storage Disease 1a (GSD1a). The first five months of her life were filled with doctor’s visits, ER visits and hospital stays. When her diagnosis of GSD1a was given we thought our original dream of travel might be a thing of the past. With feeds every 90min to keep our little lady safe and alive, a feeding tube, feeding pump and a severely restricted diet, getting out of the house let alone out of the country seemed daunting. 

 Baby Penny Ambulance RideBaby Penny NG TubeExhausted in the Hospital

 

 

 

 

 

 

Penny’s hospitalization and diagnosis came just a couple of weeks before a previously planned work trip to Las Vegas and a trip that we had planned for my brother’s wedding across the country in North Carolina. These trips that once seemed “a little difficult” with a 6 month old now seemed impossible. Penny’s doctors assured us that if treated properly and if we stuck to the strict schedule, Penny could lead a “normal” life. When we asked about our upcoming travel we were given the ok and even encouraged to head out on our previously planned trips. The kind words and encouragement of our doctors gave us hope, so armed with travel letters, emergency protocols, and a ton of medical supplies, off we went.

For us, this was a moment, a  moment where we chose to still do what we could to live our life and make our dreams happen. It didn’t mean we would disregard the needs of our daughter and put her in in situations where she would be unsafe, but it did mean that things might take a little more effort on our part. Since then, we have traveled all over the United States, had a little boy Simon, who also has GSD1a, a sold our home and moved abroad to experience long term travel. We are currently living in small town Pedasi, Panama enjoying the sun and learning Spanish. Follow us along our journey and see where we will go next!