We our back from our medical trip to Boston and are glad to be home. We spent about a week up in Boston and although we did not find the answers we were looking for, it was one of the best things we ever did. The hospital and staff up there was amazing. We saw…
You may have followed our journey with my daughter, Elizabeth and all of her health issues. She’s had three hospital stays in her 7 months that she’s been alive and now we are leaving tomorrow to go to Boston. The doctors here are at a loss of what else to do, so we are taking…
Understanding and learning how to use Google to research a new diagnosis for yourself or your child is daunting, but it doesn’t have to be impossible! Diagnosis Anxiety During the first year of my daughter’s life, she received many diagnoses. Her body failed to thrive; she had severe reflux/GERD, projectile vomiting, aspiration, and Laryngomalacia. At…
With my new series on Ehlers-Danlos and “The Trifecta” (Dysautonomia, POTS, Mast Cell Disorders), I have already been getting many questions about the pediatric doctors we see for these disorders. Since we are a military family, we have traveled to other states and seen other pediatric doctors that I would highly recommend. While most of…
It’s been exactly one year since my daughter received three official diagnoses of Ehlers-Danlos Syndrome Type 3, Dysautonomia (POTS), and Mastocytosis/Mast Cell Activation Disorder. When you have all three of these together, they call it “The Trifecta.” Of course, you can have each one separately without the other, but more commonly you have at least two…
One of life’s most important questions for a mom with a child on a feeding tube is how to keep the formula cold all night long while the child is sleeping. Some moms have to refill the bag several times a night. Some use an ice pack that may or may not work, but can…
Most families like to travel. They want to see the world, visit family, and go on vacation. But what if you’re a special needs family? What if you have a tube-fed child? It may be more difficult to travel due to how expensive it is and because of all the medical equipment you would have to…
Thank you, Jenny Craig for sponsoring this post and helping me be less of a stress eater. — Get serious about losing weight with Jenny Craig! Many of you know I am a special needs mom. What many of you do not know about is my struggle with my weight due to the stresses that come…
I don’t know about you but I absolutely love coffee. I drink it almost every day and the right kind can give me that extra push I need to get through the day! As a military family, we are always looking for ways to give back and finding coffee brands that support and aid our troops…
***I am not a lawyer. This is not legal advice.*** I have been wanting to write this post for a very long time. My daughter who is two years old has been inpatient at the hospital nine times and this doesn’t include ER visits! Many of these hospitals have been all over the country, including…
I’ve been sitting on this post and update for awhile. I have been working through my thoughts and feelings in counseling and I wasn’t sure yet what I wanted to say to family and friends. In the past year and half our daughter Elizabeth has been hospitalized seven times, seen numerous doctors and specialists, had several surgeries,…
