Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

August 1, 2016

Monday, August 1, 2016

Monday, August 1, 2016

Tonight's picture was taken in August of 2005. Mattie was in Los Angeles visiting my parents. I snapped this photo of Mattie playing one morning in the kitchen. He literally put one of the boxes to his toy cars on his head, wore it like a hat, and decided to prance around like this. I think he was acting like a train conductor and he felt he needed an official cap. 

Visiting Los Angeles with Mattie was always a hoot for the first couple of days. Mainly because he was on East coast time and that three hour difference really affected him. At 4am, he would be wide awake and ready to start his day and play. Peter and I on the other hand were wiped out.

Quote of the day: I am certain of nothing but the holiness of the heart's affections, and the truth of imagination. ~ John Keats

I had the opportunity today to connect with a friend of mine who was also asked to consult with a sleep doctor. Like me she too felt she didn't have a sleeping disorder, but after testing was diagnosed with one. The irony is she and I are seeing the same sleep practice. I can't say that all sleep doctor visits are like this, but as we were putting our two heads together, I have come to the following conclusion. This practice seems very focused on diagnosing apnea. In fact, even in my first appointment before getting any actual data on me, the doctor walked me through the mechanics of apnea, with photos. Then he showed me sleep apnea machines. I made a note of this because to me this was putting the cart before the horse. In my opinion I was going to consult with him to rule out a sleep disorder, and in his mind he was sure I already had one. Frankly I would love to do an unofficial survey of patients who walk through their doors, because my hunch is a majority of them are diagnosed with apnea. 

This sleep practice also requires that you log onto their electronic system within 24 hours of being seen so you can communicate with your doctor. So I complied and when I logged in I could see the doctor's notes from my visit. In the notes it basically said that I reported apnea symptoms, which isn't true. There are many reasons why someone doesn't sleep well and wakes up tired, it doesn't have to be apnea to explain this. So I have been confronting this discrepancy in emails since I read the notes and stated my disappointment in their conclusions. In my opinion the doctor has judged me before I ever took a sleep study, which I am supposed to do in a week or so. 

When I met with the doctor last week, he told me that people with apnea tend to be overweight, middle aged men, with enlarged tonsils, frequent alcohol use, have necks larger than 16 inches, and are smokers. I don't meet any of these criteria, nor do I snore or has anyone ever noticed that I stop breathing when I sleep. Yet after expressing all of this he then says that not every one with a sleep disorder meets this profile and because I have a small throat and am a chronic migraine sufferer, who potentially has fibromyalgia, this correlates highly with sleep disorders. So here is the bottom line with this group..... you can be overweight, normal weight, skinny, small neck, large neck, etc... and still be diagnosed with a sleep disorder. 

What this proves to me ONCE again is that you have to be your own doctor and direct your own care because if not, certain doctors will railroad you. This practice strikes me as "the my way or the highway" kind of approach, which is why I am surprised that my internist even recommended this practice. It is unfortunate what this doctor's office has made me, and probably countless other patients, endure. Because it is very scary to think that this doctor knows my own sleeping patterns better than me, but worse wasn't really taking into account all I was telling him. To me there are many explanations for physical symptoms and one just can't jump to conclusions using a myopic lens. I love Peter's line..... when you are a hammer the world is your nail. This statement applies beautifully to the experience I am having with this medical practice. 

1 comment:

Margy Jost said...

I love the picture of Mattie with the box on his head. A child's imagination is so precious. It is obvious from pictures, that Mattie had a great one!!!
I like Peter's comment about the nail & hammer - SO TRUE!!!! But so awful that in this case it was about a medical problem.. It is certainly true that this Dr. saw you as a sleep apnea patient when in fact you were there to consult to see if this one of the ways fibromyalgia is affecting you. Not all patients with fibromyalgia have sleep apnea. But today many people are diagnosed, using CPAP machines, making me wonder if this is the new catch all way to fix some issues. When you can't find out the why of symptoms, say sleep apnea.
I am sure your rheumatologist was shocked by this treatment.
I shared with you Ken's story. He does indeed have it. He has none of those descriptors, you shared. But he does snore, stop breathing, then start up again louder than ever. He also has AFIB. He, like you questioned the Dr. at length but it was not assumed he had sleep apnea until two tests confirmed, he did. Ken had such a different experience with a sleep Dr. But your blogs points out how common this is becoming which to me is a red flag!!!!!