Blog Posts
Beach Vacation
Every year, we head to the beach to spend an entire week with my extended family. This year, everyone was able to join, so the house was full with 8 adults, 9 kids between the ages of 1 and 15, and an au pair – a total of 18 people in one house! It’s a week that we look forward to every year and my dad describes as “the best week of his year”. With this many people in a house for a week, especially family, things can get stressful. To add to the stress, traveling with a child
Rocky Top
Where to go on Spring Break? That is a question that has fewer answers when you are traveling with an infant, especially an infant with special needs. Making it even more difficult, we want to make sure the vacation is fun for a 14, 11, and 3 year old. Sounds impossible, right? Well, we tried and this year, we decided to pack up and head to Gatlinburg, Tennessee! It's not the beach, but some refer to it as the Myrtle Beach of the mountains, so close enough! The vacation was filled with some great memories for all. We headed
Sleep Study
We've mentioned several times that one of the common symptoms that come with Schaaf-Yang Syndrome is sleep apnea. Sleep apnea is something we knew very little about prior to Hayden, but since we've learned a lot about it. There are two types of sleep apnea: obstructive and central. Obstructive means that there is something obstructing the airway from functioning properly. This could be due to a variety of things, including enlarged tonsils or adenoids, a narrow airway, a tongue that sits in the back of the mouth, etc. Central means there is something in the central neurological system in
Rare Disease Day
February 29th (28th on non-leap years) is Rare Disease Day (www.rarediseaseday.org). Rare disease day was created to raise awareness and generate change for the 300 million people worldwide living with a rare disease. Hayden is one of those people living with a rare disease. She is one of about 250 people worldwide known to be diagnosed with Schaaf-Yang Syndrome, a genetic disorder related to a mutation on the MAGEL2 gene on Chromosome 15. Feeding difficulties, developmental delay, joint contractures, intellectual disability, sleep apnea, and autism spectrum disorder are common with her syndrome. Early intervention and therapy are the best
Stronger Every Day
As you go through life, you never truly know where life is going to take you or who you are going to meet. We all think we have a plan, but the second we begin to think we've got it figured out, life comes at you. The great Mike Tyson said it best, "Everyone has a plan until they get punched in the mouth." While we didn't get punched in the mouth, we certainly didn't plan on having a child with special needs. But one of the beautiful things about having a child with a special needs is you
Christmas Present
Christmas is always a time of year that has been dedicated to family and togetherness. Last year, it was the same.... but different. We had just gotten home from the hospital on December 9th to start our new journey as parents of a special needs child... and were terrified. We had great support from our families; one or more family members was with us for nearly 2 months. It was great to have company, but the company was out of necessity as our physical and emotional state was shaken. We weren't truly enjoying the company we had. Fast forward