Sunday, March 29, 2015

The Heartwrenching Part of the Last Year

It's been a year since I took Mr. Boy to the doctor for what I thought was Fifth's Disease.  A little over a year since the doctor said, "My spidey senses are tingling, this isn't Fifth's Disease."  She was right and a few days later we were asked to come in to meet with the doctor for the test results.  That was the low point of 2014. 

Inconclusive Auto Immune Disease, resulting in Arthritis, Photo sensitivity, and a fiery red hot cheeks.  He also overheats easily like he has a bad radiator and absorbs zero Vitamin D from his diet or the sun.  We've ruled out the Lupus, Lyme, and a 100 other things.  They say if Mr. Boy is the first to have this illness he will get to name it and it's starting to look like he needs to start thinking up names.

 It's been a year of tests and lots of hospital visits.  The good folks at UCLA Mattel Children's Hospital have taken good care of us.   In many ways I feel like we are no closer to figuring this out than we were a year ago.   Some days I wonder if voodoo might be just as effective.  For now, he takes a cocktail of medicine to keep him stable.  At the end of each hospital visit, Mr. Boy is usually asleep in the backseat before I pull out of the parking structure.  I put on my big sunglasses and let the tears fall that I have been holding in all day. 
During these appointments I have to put on a brave face, because I know that he is watching me  and looking for reassurance.  This is not Mr. Boys favorite and he is frustrated too.  He had to retire from sports, he just can't move like he used to.  It's been an adjustment, but he adapts for the most part like a champ.  He still has his bad days and questions "Why Me?"  but can you blame him? 

Another round of testing is on the horizon, Mr. Boy has mixed feelings about this.  Hates the needles, but likes the idea of finding a treatment. I'm in awe with the grace of how he has handled himself.    For now, we are open to any and all suggestions, no matter how far fetched. And as always good thoughts and vibes are appreciated. 


Liz R. said...

I am so sorry. Having a sick child, especially one with an illness difficult to diagnose is a nightmare. Don't lose hope! My baby daughter was diagnosed with autoimmune vasculitis after months of fevers, hives and fatigue. Three years later, after treatment, she was in remission and hasn't had a recurrence since. She's 21. Feel free to email me if you need anything, okay? I was lizandjuan on 2peas and found your blog through Mary Mary.
Sending lots and lots of love and hugs your way.
Liz XX

Cindy said...

Oh my friend. I have no words, I just want you to know that your sweet boy, as well as the rest of your family are in my prayers.

Laura said...

I love you guys.