For medically complex kids, especially those that spend a lot of time in and out of hospitals, small things like free hospital gowns for a “stuffie” can be a BIG help! Kids hate spending time in hospitals and doctor’s offices, but there are plenty of things we can do to help them adjust to this…
***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…
Four nights ago, I sat in my daughter’s hospital room trying to rock her to sleep. She had just gone through three different tests and six hours of anesthesia. My daughter doesn’t have cancer or a life threatening illness, but she’s medically complicated. Medically complicated is the term the doctors use when your child has…
Over the weekend, my daughter had another hospital stay. Thankfully, it wasn’t anything serious and just for observation, but I realized something: Elizabeth has been in the hospital for a total of 5 weeks in the short 9 months since she’s been born. The hospitalizations have been in three different hospitals in two different states, for a…
For the past week I have only been home once. I have been living in the hospital and partially at the Ronald McDonald House nearby. Hospital living is not what I expected. Of course no one wants to have to stay at a hospital, but looking back I thought that getting the help we needed…
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…
I get asked a lot about my daughter’s tubes. What are they all for and what do they do? Two of them are feeding tubes, but the third tube is a cecostomy. Most people have never heard of a cecostomy or they get it confused with a colostomy, which is completely different. To be fair,…
A while back I wrote about one of my daughter’s main diagnoses, Ehlers-Danlos Syndrome. Today, I want to write about a second main diagnosis she has called, Dysautonomia (POTS). Dysautonomia is a rare disease that usually affects women between the ages of 12-15. My daughter was diagnosed with Dysautonomia (POTS) when she was 3 or…
Hello, welcome to Singing Through the Rain! I’m so glad you decided to start here. My name is Kathryn and I have been writing this blog for 12 years. I am a coffee-obsessed, military spouse, and mom trying to get through this journey we all call life. >>> More About Me When I was little,…
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…
The Alfie Evans case is not the first case of its kind to draw attention, but it does show us just how depraved humanity can be. In many circles, there are discussions about when life officially starts and ends. There are discussions about abortion, end-of-life care, physician-assisted suicide, euthanasia and if one’s special needs justify…
