Hope is a Journey….

I was FINALLY discharged home yesterday afternoon.  Needless to say, there was a good 24 hours that were pretty scary for me there – but I am happy to report that I am feeling much better.  My PICC line has already proved to be helpful in blood draws and hydration – but I am honestly quite worried about the risk of infection – so I hope to not need it for too long…fingers crossed.

I came home anticipating a quiet and simple transition back to ‘home life’  and my ‘welcome home’ present was that Sasha was sick.  It’s looking like another sinus infection – so we’ll be heading to the doctors tomorrow morning.  She made it 7 full school days before getting sick….looks like it’s going to be an interesting year.

In other news – 2 of my 3 ‘Mito Sisters’ are out of the hospital (yay!).  I’m really praying that things get better soon for Chelsea – she was moved out of the ICU earlier this week and is awaiting word on what the next step is.

We did, however, make it out to see her early today….it was a nice (unfortunately too quick) visit.

Our Mito Gang: Sarah, Chelsea, Mighty Matthew, Me, Beast, and True

Chelsea's "Med Grid" - Imagine having to pull that thing around everywhere you go?

 

It’s a busy week ahead……There’s only 5 more days until Show of Hope!!!!  I am really excited for the event and am hoping that my friends and family are able to make it out to support an event that is so near and dear to my heart.

Tickets are on sale NOW – click HERE to purchase tickets! Can’t make it that night?  You can make a secure donation online to support this event by clicking HERE!

DID YOU KNOW?????????

Today marks the start of Mitochondrial Disease Awareness Week.

What Mitochondrial Disease Is…

 

Many people don’t know what Mitochondrial Disease is…so I will be posting daily here all week to try to help you understand this disease more….

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.”  (Courtesy of UMDF)

Please take the time to watch the above video created a few years ago by a friend…it’s a pretty accurate and sobering description of this disease.

Love and Light,

Stefani

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