Advertisements

Opsoclonus Myoclonus Syndrome

This category is all about my son’s condition. He took a nap on June 6, 2017, and he woke up without the ability to walk, stand, stop shaking, feed himself, etc. He was misdiagnosed several times.  These misdiagnoses included strep, Cerebellitis, and Ataxia Telangiectasia Like Disorder. This is our journey.

When OMS Roars It’s Nasty Roar

When OMS Roars It’s Nasty Roar Folks, not gonna lie.  This week has sucked the life out of me. When OMS Roars It’s Nasty Roar it is very nasty, indeed.  What started out as a normal week has ended with an intense fear overtaking my body while OMS takes over Hunter’s little body. Some Highlights …

When OMS Roars It’s Nasty Roar Read More »

Advertisements

Just Be Held

Just Be Held  I am, quite literally, having a come apart right now.  It has been a week, month, year…just a lot.  Here are the lyrics to this song. Just Be Held Hold it all together Everybody needs you strong But life hits you out of nowhere And barely leaves you holding on And when …

Just Be Held Read More »

The Key to a Successful IV

The Key to a Successful IV Friends, neighbors, countrymen…lend me your eyes.  We have figured it out!  A couple of months ago, Hunter got a slight cold.  In a healthy child, that would look like a low-grade fever, snot, cough, just feeling yucky altogether.  In an OMS child, however, it is a different ballgame. Flare-Up …

The Key to a Successful IV Read More »

Amish Iridologist In Pictures

Amish Iridologist In Pictures Well, I sort of am doing the Amish Iridologist In Pictures.  I do not take pictures of the Amish because they do not want their pictures taken.  This is a respect thing and I choose to honor what they asked of me. We stayed in a little town about 45 minutes …

Amish Iridologist In Pictures Read More »

Excuse Me While I Cry

Excuse Me While I Cry Well…if you will Excuse Me While I Cry, I would appreciate it.  Hunter’s teacher, Ms. Kim, sent this to me last week.  He spelled his name by himself for the first time ever.  Let me explain the “by himself” part. Hunter has Opsoclonus Myoclonus Syndrome.  His condition is 1 in …

Excuse Me While I Cry Read More »

YouTube Videos

YouTube Videos I have been working hard on these YouTube Videos.  It has been emotionally draining watching each and every video I have taken of Hunter.  My goal is to bring awareness to Opsoclonus Myoclonus Syndrome. Misdiagnosis Hunter was misdiagnosed MULTIPLE times over the course of the 2 years that he got sick.  OMS is …

YouTube Videos Read More »

Amish Iridology

Amish Iridology I get a lot of hits (searches) for Amish Iridology and Reuben Schwartz.  With the amount that I get, I thought I would do a follow up on him.  I will also link below, in Related Posts, the past things I have written. As always, you are more than welcome to send me …

Amish Iridology Read More »

New Video from NORD

New Video from NORD Here is a brand New Video from NORD.  For those who have no clue what NORD is…it is the National Organization for Rare Disorders.  This site does not have the run of the mill type of conditions.  By “run of the mill” I mean those that are diagnosed frequently. Awareness This …

New Video from NORD Read More »

Little Bit of Everything Going On

Little Bit of Everything Going On There has been Little Bit of Everything Going On lately.  Last week, I spent several days in St. Augustine, FL with my daughter and son.  We went to get his treatment and learned so much, again. It has been mentioned to us that one of our children has “recovered” …

Little Bit of Everything Going On Read More »

Beads of Courage

Beads of Courage We have been trying to get Beads of Courage since this journey began 2 years ago.  I first learned about them from a fellow blog mom Renee’s Little Earthling Blog.  Her son’s story was where I read about it. Norton’s Children’s Hospital At the 3rd hospital, Norton’s Children’s Hospital, we approached a nurse …

Beads of Courage Read More »

%d bloggers like this: