Category Archives: Medical & Therapy

Bilateral Hip Adductor and Iliopsoas Releases with Brace Application

Riley leads a sedentary life. Sedentary is not exactly how I think of Riley. He has a lot of energy and being Riley takes a lot of energy. The reality, however, is that his activities are confined primarily to a seated position. My yoga instructor, Matthew, recently observed that “our body adjusts to how we live life.” In Riley’s case the body falls apart to how he doesn’t live life: no running, no playing, no exercise…

Bell Rung

Sharing our journey here is meant to be more than a place to vent. My intention is to open a window for those on the outside of this complicated life to gain some understanding while sharing circumstances which may help those facing similar decisions and situations. Therefore, I do plan on talking about Riley’s surgery. But for the moment, I may be a little on overload. We all know the expression “When it rains, it pours.”

This is where we are today.

Top Ten Self-Disclosures

My wife was playing with a post for tonight… Bit too technical for me (medical terms and all). I work in Information Technology so that is saying a lot… But I read one thing she wrote and decided to run with it… (LOL … keep on Running until the Devil knows you are gone… Country fans will get it…)…

She wrote:

In planning, our doctor notes that “complex Neurologic issues can cause unexpected results.”

That is the PERFECT note: To the point as it describes our life and the lives of many who read this post.

Ultimate Decision

Some years ago Riley had a medical procedure done that I found barbaric. Basically it has something to do with his shunt… I called it the lightening rod procedure. Put a metal monitor (bolt) in his skull/brain (exposed) and hold him still for 48 hours, intended to be 24, so they can read what is going on. Given Riley’s expressive nature. Holding still was a task. But I did it (actually he did it… I was just along for the ride) and I never imagined anything worse…. Until recently…

Hip Subluxation

The decision has been made.

Shunt Watch

We returned to the Neurosurgery Clinic at All Children’s in Fort Myers for the first time in two years. 

Battling Dystonia

Dystonia: Disorder which causes involuntary motion, twisting and/or repetitious movements of the muscles.

Trough’s and Peak’s: A Hitchhikers Guide to “Say Yes to Drugs”

When I was young and seeking a career path,  I wish my intuition/Fate would have led me to train in the practices I would actually need now that I am a special needs parent (maybe I should have paid more attention to the Ouija Board or Crystal Ball… hmmm where did I put that fortune cookie?).    Anyway.  Now, with a complicated (love these Politically Correct words!  OMG) eleven year old son,

Vent

Monday, October 28th

“Fantastic!”  Dr. B’s accent rang in my ears as I loaded Riley into his van to make the long drive for the first appointment of the day. 

Vitamin D Deficiency

Our family friend, Laurie, volunteered to share a paper she wrote on the importance of Vitamin D.  As caregivers, it can be challenging simply to keep up with daily tasks let alone keeping up to date on the latest health information. 

Laurie sent this to me noting: “I was thinking about your kids getting sick a lot. They could be deficient, esp. Riley because he gets very little sun exposure and is on antiseizure meds.  I have been learning a lot lately about the fact that a lot of us don’t have enough vitamin D because we don’t spend enough time outside (getting full sun exposure for at least 30 minutes a day). I am very interested in the work of the Vitamin D Council and have contacted them to get involved in spreading the word. I have summarized what I have learned in the attached article.”

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