We are a military family living in Colorado Springs with our two special needs kids. Our daughter, Elizabeth, was recently diagnosed with several rare genetic disorders including Ehlers-Danlos Type 3, Dysautonomia – POTS, and a Mast Cell Disorder. After three years of searching for an overall diagnosis for Elizabeth and finding it, we realized that…
As some of you may remember, several months ago my daughter, Elizabeth, was diagnosed with several rare genetic disorders including Ehlers-Danlos Type 3, Dysautonomia – POTS, and a Mast Cell Disorder. After three years of searching for an overall diagnosis for Elizabeth and finding it, we realized that a service dog would be life-changing and potentially…
My Dearest Deployment: My husband and I are coming up on our fourth wedding anniversary, and I thought I would take a minute to write you about this last year- our “newlywed” year. It was a hard one! I can’t believe it took us three years to finally get one to ourselves, without you coming…
I’m so excited to finally share the birth story of my little girl, Elizabeth! It’s been a little over two weeks since she’s been born, and it’s been quite the roller coaster ride, but I have been enjoying each and every moment inspite of how tired I am! The day before I went to the…
We have about six weeks left, and I finally was able to finish with my daughter’s nursery! It feels good to be done, and also to look back and see how we transformed a small room into a little girl’s nursery. It took some work and a little research, but my husband and I did…
Well, I have finally reached the third trimester and I’m certainly feeling more exhausted! The second trimester was a lot better than the first trimester and for that I am so thankful. The third trimester sneaked up on me, and now I only have 9 weeks left to go! It’s been so crazy to think…
On February 23rd, 2017, after three years of looking for a diagnosis, my daughter Elizabeth finally received not one, but three main diagnoses from a local geneticist. For me, it was not a shock. I knew there was a diagnosis out there that fit her and I was not afraid to continue searching in spite…
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…
There are many beautiful dolls out there that parents can buy, but for kids who have special needs or special medical equipment, there aren’t many dolls that “look” just like them. One woman decided to change this by opening up a doll shop on Etsy and these special needs dolls are inclusive of everyone! Owner…
Many of you might remember that we are trying to raise money for my daughter (who has complex medical needs) to get a service dog. You can read more about her and how you can help on her page, A Service Dog for Elizabeth. A friend from college contacted me about doing a fundraiser for…
Due to my daughter Elizabeth’s complex medical needs, she has a pediatric home health nurse. People are very curious about this. What does the nurse do? What is it like having someone in your house all the time? Usually, people are surprised by my answers, but the reality is that our nurses become like family….
