Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

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

July 29, 2016

Friday, July 29, 2016

Friday, July 29, 2016

Tonight's picture was taken in November of 2002. Mattie was seven months old and I was sitting on the living room floor playing with him. I had all sorts of pillows propped behind Mattie so it would help keep him upright. As you can see he was fascinated by his cups. He loved the colors, shapes, and stacking and unstacking them. Of course as he got older, Mattie realized he could fill these cups up too! That made for endless play opportunities! 

Quote of the day: A word out of season may mar a whole lifetime. ~ Greek Proverb

Since Mattie died, I have had the pleasure (and I am being sarcastic, in case you can't tell), of seeing many medical doctors to deal with all sorts of physical issues that in my perspective are the by-product of stress and grief. Of course if you should have such a rational conversation with a medical doctor, I can tell you what happens. They listen, may say they are sorry for your loss, but then quickly move on. It is as if they are devoid of human and emotional skills and worse are unable to truly treat the entire person in front of them. The sad reality though is because stress and grief are hard to measure and quantify, these factors become inconsequential to them and are NOT considered to contribute to the problem presented to them. 

That sets the stage with the doctor I met today. About two weeks ago I was examined by a rheumatologist who believes I have fibromyalgia, but wanted me to consult with a sleep doctor to determine whether I have a sleep problem or whether my poor sleep is a result of pain. Though I do not feel like I need to see a sleep doctor, I complied and finally got an appointment today! 

You know when you meet someone for the first time and you feel like this connection is NOT going to work out? That was my immediate read with this doctor. But he broke Vicki rule #1...... he proceeded to tell me that he knew my situation BETTER THAN me! His assistant measured my neck of all things, because apparently the bigger your neck the more likely you are to develop sleep apnea. Honestly? Who comes up with this stuff. Fortunately I have a small neck, but that did not slow him down. I am sure everyone has heard of sleep apnea, how could we not with all those horrid CPAP machines we constantly hear advertised on TV or the radio! 

But sleep apnea is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep apnea usually is a chronic condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of deep sleep and into light sleep. As a result, the quality of your sleep is poor, which makes you tired during the day. Sleep apnea is a leading cause of excessive daytime sleepiness.

Given that definition, I strong believe I do not have sleep apnea and having gotten reports from Peter, he too agrees with my assessment. But despite that reality, the doctor took a thorough family history of me, did a medical exam (particularly interested in my throat, uvula, and tonsils), and then quickly recommended a sleep study. My luck because there are high incidences of sleep apnea for patients with fibromyalgia and chronic migraines. He was so persistent that toward the end of our meeting I let him have it. I basically told him that I have enough going on right now, I don't really need his fishing expedition to find something that I don't feel I have! The worst part about this is insurance. My insurer insists that I do the study at home. No problem with me, until I heard that the home study is TYPICALLY inaccurate and therefore, the office always follows it up with an overnight sleep study in their clinic. But they first have to comply with the procedural steps of the health insurer! So in essence I will have to do a sleep study TWICE. 

I can't tell you how agitated I was with this whole interaction and then adding to all of this two sleep tests. The in home test involves a home based portable monitor that will record:

The amount of oxygen in your blood
Air movement through your nose while you breathe
Your heart rate
Chest movements that show whether you're making an effort to breathe

So I have a sleep study in my future in about a week and frankly I am not looking forward to the further interactions with that office. When I find that a doctor's temperament makes my blood pressure and stress level go up, that isn't a good sign!

1 comment:

Margy Jost said...

The correct Dr. Makes all the difference in feeling we are the right path to wellness. The wrong Dr. leaves us feeling pressured into some test, drug etc. that we don't feel we need and also makes us feel unheard. First impressions are important and when they don't go well instead of being helped, we leave feeling worse than going in the correct direction. Follow your own instincts for only you truly know how you feel. The Medical Community always wants to blame psychological reason when they can't come up with a physical reason for the problem. But when a patient presents symptoms that are clearly the result of grief, stress & trauma, they often don't know where to start.

Mattie was a beautiful baby. I love your pictures!!!!