Daphne finally got her SMOs and Heko braces and she was so proud of herself for walking in therapy last week!
She should feel great, like a million bucks great, oh maybe not a million but $5,000 great.
That is how much “medical grade” equipment she is wearing.
Our out of pocket for the three times was over $800.
Most families dealing with a child or family member that is medically compromised cannot justify excessive mobility costs when they are trying to afford everyday life.
This is one of the reasons I started Daphne’s Lamp.
There are those days you wish you could just go back to bed and wake up like nothing happened.
Bad things come in 3’s Right?!
I spent 4hours away from my family on Easter to read 812 pages to prep for a big RFP and then to see the company is thinking of hiring a consultant to do the work and pay them a whole lot of money! Annoyed!
This town we live in sure has some unfortunate souls. I wish they could appreciate being a parent to a thriving child and not damage them as they were damaged as a child.
I know we are supposed to find forgiveness in our hearts but boy when you see them breaking the spirit of a child it sure is hard and when others act like the most immature adults you kind of go…what?!
All you can do is hope and pray that something gives them a swift kick in the ass to get it right!
Another low for the day, one that put me in sobbing tears was to find out the the girls pediatrician left the practice. I seriously started to read the letter posted at the front desk and said I am going to cry.
You all may think I am silly but this woman has been with us from the beginning with Daphne and was the calm to my crazy. She was complete opposite of me and at times that was frustrating but other times it was needed to give the right balance. Having a child with a very complex disease like Daphne’s bouncing from doc to doc is not an easy option in my eyes. This lady went above and beyond for us and exuded care that was recognized by many and I just can’t imagine what took her away.
As I sobbed in the nurses arms she said she would call me as soon as she knew what she was doing and where she would be going. In the meantime I was left with 1 doc at the practice and the owner that I did not like and who called in the wrong prescription for Daphne after overlooking all the issues of her culture, 2nd doc who just does not get Mito diseases and has the personality of the owner and the 3rd doc who is sweet and friendly like our doc but she is young and just doesn’t get it completely. She does know about Mito diseases from working in Hershey, PA with the Amish who apparently run rampid with Mito do to the small gene pool but still it is not going to work.
After all of this, we have a sick Daphne that started Saturday and got worse Sunday and today. She stopped eating, drinking and taking bottles. Now she is on Albuterol breathing treatments every 4 hours. I hope this helps.
I get to start my day tomorrow with a 6am conference call to review those 812 pages.
Fingers crossed for a better day! If not I am calling it quits and starting my weekend early!
A year ago she lost the use of her hands, arms and rolling over.
Now she can scoot backwards and pivot!
Go baby, GO!
This is BIG!
The BIG Announcement aka my SECRET Project is finally ready for it’s debut!
I have created with the support of my husband:
Daphne’s Lamp 💚which is a 501(c)(3) non-profit!
Our Mission: is to help people with Mitochondrial Diseases afford medical expenses.
About Us: The founders, having experienced the struggle first hand with healthcare to get approval for therapies for their daughter. Daphne’s Lamp seeks to lighten the burden of Mitochondrial Disease on patients and their families by increasing access to quality of life improving prescription drugs, vitamins, supplements, orthotics and mobility devices through financial aid and advocacy.
Daphne’s Lamp was inspired by the story of Florence Nightingale who was a hero in Victorian England for nursing wounded soldiers in war zones, giving aid and comfort where others were unwilling. She was known as “the Lady with the Lamp.”
From that Daphne’s Lamp “Let There Be Light” was developed to shine light on an area of darkness in more ways than one. Let There Be Light also uses the acronym for Daphne’s Disease LTBL (Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate).
I have been anxiously awaiting this paper for weeks now and it finally came!
I will be donating a percentage of my profits from my side businesses to my non-profit.
I will be visiting the Capitol this summer to make a change, get ready congress, I’m coming for you 👩🏼💼💪🏻
Thank you to everyone that has helped!
#daphneslamp #lettherebelight #mitosucks #daphnestrong #mompreneur #determined #timeforachange
I am staying up way to late to write this, for those I may see at work tomorrow….
I’ll take a nonfat no whip mocha java chip frap 🙏🏻
I’ll make it quick…
Right because I don’t ramble, ever!
Little miss poo has been babbling some Ba, Ma, Oh and all kinds of stuff since January-ish. Ask me when speech started and I need to search the calendar in my phone but it was around 18 months. So you do the math, it’s midnight here and I am tired.
Anyhow after a late crazy night with her deciding to party at 1:30 after her bottle till about 4am she slept with me and fell asleep talking and woke up talking.
It’s honestly the sweetest sound and I hope it turns into more.
Some will claim they have heard Mom screamed in distress and Mara when she was loving on her pup but we have to get intent behind it to count it.
The other little diddy I finally caught on video was her mimicking Adelaide and I, this is pretty freaking huge for her.
So I have a big announcement hopefully coming out this Spring.
In the meantime I am happy to announce that I just made my already extremely busy life of wife, mom, contracts administrator, gardener, pool gal, pet owner, chauffeur and insurance expert even busier with being an independent consultant and stylist!
All the love is appreciated and ask me about anything!
P.S. wait to see how these will touch my big announcement.
A little glimpse into the rollercoaster of emotions that special needs parents go through.
The Stigma of a Special Needs Mom with Depression