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rare disease treatment

Medical Update

Medical Update Here is our current Medical Update.  We went for his 3-month neurology check-up yesterday.  So thankful that it is a closer drive and for the most part, uneventful.  Add that to it was an afternoon appointment and that meant home earlier. Thankfully, I had 1 freezer meal left from my massive freezer cooking …

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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 …

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Time to Get Over Ourselves

2 Day Hospital Stay In this post, Time to Get Over Ourselves, Hunter, Alyssa, and I have been at Vanderbilt Children’s Hospital for 2 days for his infusion.  This is the hospital that misdiagnosed him the second time.  Now, after 2 yrs we have found a specialist who has seen his condition. Now, she has …

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The Results of MIBG Scan

The Results of MIBG Scan The Results of MIBG Scan are here!  Is it sad to say this is a bittersweet result?  On one hand, Neuroblastoma (NB) is the cause.  Amongst the cases, between 50-80% are NB related.  Some cases are being identified as something that happens after a virus.  Also, after vaccines.  Lastly, autoimmune. …

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MIBG Scan

What is an MIBG Scan? According to the Cleveland Clinic, “An MIBG scan is used for localization of known or suspected neuroectodermally derived tumors, including pheochromocytoma, ganglioneuroma, ganglioneuroblastoma, paraganglioma, carcinoid tumor and neuroblastoma.” This is something that I have requested from several hospitals but was always told no.  Now, we are embarking on a new …

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OMS Warrior Playing Baseball

OMS Warrior Playing Baseball.  Who would have EVER thought that this boy would be able to play t-ball?  Not me!  Well, I take that back, we were going to have him play BUT he was going to use his wheelchair or gait walker. Wheelchair vs Gait Walker This time, last year, he was in a …

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Reflecting on an Anniversary I Would Rather Ignore

Reflecting on an Anniversary I Would Rather Ignore.  It has been 2 years.  So much is the same, yet so much has changed. But, on this day,   Our Lives Changed Forever Anniversary I Would Rather Ignore. What began as a somewhat normal day. Turned into…… A nightmare. Get up at 8:15 am G got …

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Reflecting on our Amish Iridologist Reuben Schwartz

On the Road Again Reflecting on our Amish Iridologist Reuben Schwartz.  Here we go, back to the Amish Iridologist Reuben Schwartz, so he can Look Deeply Into My Eye.  As we travel back to Hestand, KY, we meet up with Dr. Reuben Schwartz.  I’m so thankful that the trip is not too long, about 4 …

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Reflecting on this Open Letter

Reflecting on this Open Letter to the Public.  There are days when it doesn’t bother me.  Yet, there are days when it does.  Believe me, I pay attention.  Also, my son and my other kids…they pay attention.  They all wonder why people are staring or whispering.  It is uncomfortable to watch some of the reactions …

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Reflecting on Looking at a Miracle

Reflecting on Looking at a Miracle. “Did you even know that you were looking at a miracle?” That statement was said to me, at the chiropractor’s office.  In the midst of my self-imposed chaos, that statement made its way from a gentleman’s mouth to my ears. I just sat there, with my mouth open and …

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