Simon’s Fund and Children’s Heart Defects

This is one of those "meant to be" stories. Simon's Fund is a nonprofit dedicated to screening for heart defects in children, especially Long QT Syndrome. For about the past year, my husband and I have been waiting on a definitive diagnosis of Long QT Syndrome for our 13 year old daughter, Sammi. And then in April, I read a blog post about Simon's Fund on my friend Jessica's blog, Look Who Found the Marbles. I asked Jessica for the contact information for Simon's Fund so I could write a blog post about the organization. Instead, I got an email from Simon's Dad, Darren and then a phone call. … [Read more...]

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Medically Complex Child #specialneeds

So after another visit to All Children's Hospital, my daughter has been labeled as a medically complex child. It is not something that any parent wants to hear, but it helpful when getting diagnoses and getting treatment in the medical field. Physicians are more likely to keep up to date on tests done by other doctors, new medications prescribed by other doctors and work together with other doctors treating the child. For us, our daughter's primary doctor, her pediatrician, is local. She gets all the medical records when updated from each specialist. The specialists are located in another … [Read more...]

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