2nd Birthday

I can’t help but starting off this post with..

This time last year I NEVER thought we would see this day.

The day before Daphne’s 1st Birthday we were in San Diego visiting one of the ‘IT’ doctors in Mito who delivered crushing and heartbreaking news to us.

As hard as it was I was determined to celebrate Daphne’s 1st Birthday, not knowing if she would live to see another one.

This year has been the hardest year of my life.  I have been through a lot in my 34 years, more than most and trust me that is not bragging I wish it was less but it has made me who I am now and has taught me many valuable lessons, the most important for our current life, is how to fight for what you believe in, speak the truth and the facts and the rest will fall in line.  A saying that I have been saying for years now in my job (a world of disbelieving men that I constantly have to battle with)  “Prove me wrong, it will only benefit you if I am wrong.”  My intuition and knowledge is usually spot on.

Back to the Birthday Girl.

Her day looked like this:

She woke, in bed with Rich and I angry because she missed her 1:30am feed so she took 6 ounces.

Got dressed in her Unicorn 🦄 outfit and headed to PT (I made her skirt)

Then breakfast in the car with me, a mini photo sesh waiting for her doctor’s appointment (the light was just beautiful, no filters here).







Can you see the 2 year old behavior 😂

Then at the doctors office hopefully we got the answer to all the sleepless nights….Sinus Infection.

Poor kid but hopefully the meds work and she gets back to her.  She has been running a low grade temp almost everyday, fussy, not eating well, NOT sleeping well at night and congested but not in her lungs for weeks so this is the next step.  It has been over 2 months since she was on an antibiotic and that is a pretty big deal!

Then Daphne went to her babysitter who greeted her singing Happy Birthday, she was all smiles.

In the afternoon she had a followup at her Neuro-Opthamologist, poor kid got dilated.

We rounded out the evening with dinner at IHOP and presents.  Her favorite is her Mini mouse 4 wheeler from Adelaide.


As I write this I remember we forgot to sing Happy Birthday, light her candles, eat cake and give her, her trampoline.  Tomorrow will be a little continuation and a picture in front of the Unicorn photo wall I made from Pinterest (forgot that too and it’s been up since last week 🤦🏼‍♀️)

A friend helped decorate this cake which she did great but it still was a Pinterest fail and moments after I put it back in the fridge it fell over!  I tried!

What it was supposed to look like:

What it looked like 🙃


She gets to start tomorrow morning off with bloodwork😢.

The life of a Mito baby 🙁

This sweet and spicy girl is loved more than she will ever know.  I spent most of the day crying yesterday and cried myself to sleep, not sure if it was over the thought of her turning 2, that she has lived to see 2, that she is getting closer to being identified as special needs/not ignorantly identified as a baby that is much younger than what she is or the thought of not having her one day (something that haunts me daily 😔), I am pretty sure it was all of the above.

I keep telling myself to live in the moment and take it all in.  I do, I really do but it’s time when I am rocking her and she stares up at me and just gives me that sweet little rotten look but also that look of being so pleased to hear me singing or humming that I just fall apart.  I will never regret one tear I shed over her or Adelaide but geesh I thought a year later things would be a little easier, a little less painful but it seems like just yesterday it all happened.

xoxo from one grateful but heartbroken mama

One year ago…

It was just one year ago today that I took this picture on a very early morning waiting for Daphne to get her first MRI.


She was just days shy of her 1st Birthday.  1st Birthday’s are a big deal to parents, or at least to me.  It’s a milestone that says YES we survived the first year and it’s the time you start seeing the most change in your little one. So it was incredibly sad for us to sit there about to put our child through what most people never experience in their life, all in hopes for answers.

Little did we know at that time the answer we were about to get was not what we were hoping or wanting, in fact it was the worst of the worst in my opinion. 

I sit here now again, with the same timeframe, just days shy of her 2nd Birthday needing to write the how we got to this point story, which I told myself needed to happen on the anniversary of receiving her diagnosis so I have a few more days.  I think I am finally ready.  I know I will shed many tears in writing it but know there will be some peace and healing with it as well because that’s how it is done right?

I am glad this day a year later is different and most importantly I am glad how far we have come and that we still have our sweet baby!

xoxo Desirée

Figit Spinners

Kids out here are obsessed with these things, I hear it’s the new bottle slipping 🤦🏼‍♀️

How do these things catch on?

Well our friends 3D printed one since all the stores around us were sold out!

We now have a few but geesh they are so dumb.

The purpose behind them was for special needs kids and the founder of the product is not actually reaping the rewards so it’s sad.

Coyote

Here in Southern California the coyotes are as common a sighting as deer back east. 

Even though you see them all the time you are still mesmerized and shocked each time.

I saw something on the trail off in the distance and said I think it’s a coyote so I went running after it 🙃.


Really I wanted to scare it away because my neighbors let their cat outside and it was about that time of day when the cat would be going out or coming in, nonetheless I was going to chase it off with my beast dog by my side.


The strangest thing happened, the coyote, female I presume walked a little further than this and stood behind some brush and just watched us.  So much for chasing it off.  So I told Mara to bark at it and I did not start recording right away but at first she jumped up and down with excitement, wagged her tail and hen started talking back, this went on for a long time.  I actually stopped it.  


The neighbor who’s house I was behind came it hearing all the commotion and said he thinks the coyotes den is right behind his house as the other night he had 3 noses sticking through his fence at him.  He only lives 4 houses down from us 😬.

xoxo desiree

It’s been awhile

I try to be so good about writing but we have been busy these past few weeks.

Little Miss Daphne was sick and has been sleeping with us for weeks off an on because of the illnesses, I am ok with that when she does not feel well so I can monitor her temp, her cough and oh yeah when she barfs in our bed 🤢
There was a nasty virus going around with a high temp lasting for days and that just piggy backed on her already wheezy cough which was being treated with albuterol.  She was a mess!  Thankful my mom was here, the night before my mom left however Daphne’s temp got up to 103.8 and she was on Tylenol, Motrin and just got out of a tepid bath so at that point I text our doc (by the way we are back with our fav doc, thank god!) and she had us up the dose to 5ml of each and that did the trick.  That was a big jump from what the charts say to dose her but you do what you gotta do.


Sleep training this girl after weeks of this have been very challenging 😴.

My girls have been so much fun in the past weeks and as I wrote down all the memories I wanted to share I thought that is too much for one post so I may trickle them out.

My mom bought Adelaide this Chillbo and it’s ridiculous, too big and the concept does not work.  Enjoy laughing at us.


I finally found the energy to finish the IRS filing for Daphne’s Lamp, it was a pain in the butt.  But I found a since of relief in the meaning of this necklace I wore on the day I mailed it. 


We finally had a warm couple weeks to open the water slide ​​​

We go to this place near us and it’s really great for kids and picky eaters.  They have these adorable little ice cream cones. Daphne does not like cold or ice cream, it was the cutest thing when she held her cone and ate it!


One of the weeks our babysitter was closed we had two college girls watch Daphne and she LOVED them, this was huge because if we get a babysitter it’s typically after she is in bed so to think about daytime with her, I was a nervous wreck.  I am lucky enough to work close to home so I stay to feed her breakfast, came home for lunch everyday and was home rather early each day just to make sure all was going well.  She watched her favorite movie Sing a few too many times that week but learned to Dance!


What baby doesn’t like to play in the Tupperware cabinet?!  Well Daphne had not been able to because of her mobility issues but this day she was able and boy did she make a mess and have a great time!


Adelaide has finished phase 1 of her braces and she is so excited to not have metal in her mouth, I am dreading a retainer with the absent minded professor because she went through 3 the first time she had a retainer 😕


XOXO Desiree

Five Thousand

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.


xo desiree 

A case of the Monday’s

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!

xoxo Desirée 

Daphne’s Lamp

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