Category Archives: My Blog

Dreaming About My Life

I never grew up dreaming of what my life would be like as an adult.  To be honest most of the time I wondered if I’d make it to adulthood. When you grow up facing medical challenges one after the … Continue reading

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American Medical Association Podcast

I had the honor of participating in a podcast for the American Medical Association Podcast, talking about treating the unknown.  Follow the link if you’d like to listen, its about a 25 minute talk. https://www.ama-assn.org/ama-doc-talk-podcast-series Select “Treating the Unknown”  

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So Much Has Happened

The last few years a lot has happened, most of it all happened all at once and it has been hard for me to accept all that has taken place and find peace with everything. I am hoping this is … Continue reading

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Family Traditions

The last several years haven’t been easy for me.  Many people don’t know it either.  In the last 16 months so much has happened and I haven’t worked on processing it all and moving past it all.  But I know … Continue reading

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Talking With The Doctors

After that first phone call the next few weeks I spoke a few more times with the doctors.  They told me again the same information as before, but I didn’t care, I waited my whole life to hear what they … Continue reading

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The Day I Had Waited My Whole Life For

In August of 2017 I got a phone call from a group of doctors who have been working to help me find out more answers.  When I returned the phone call and listened to what the doctor started to tell … Continue reading

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I’m Writing So Others Can Learn

When I first started writing this blog, I did so because I was tired of googling “Saul Wilson Syndrome” and finding nothing.  I’d type that into google (that or the more technical term Osteodysplastic Microcephalic Dysplasia) and I’d scroll throughout … Continue reading

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When You Have No Answers

Something that many people have asked me is in regards to how my family knew what to do when it came to my medical life and surgeries.  Well, the truth is we didn’t know.  With every surgery I faced, we … Continue reading

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Figuring Life Out

The last several years have been a roller coaster of events.  Since 2010 life has just seemed like its been one thing after another.  Since 2010 I’ve had 2 shoulder replacements and 1 hip replacement.  I was finishing up college … Continue reading

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Left Shoulder Update

I went in November to see how my left shoulder has done over the past 6 months. I got good news!  The doctor said that the X-Rays showed no changes over the last six months since I had had my … Continue reading

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