BIG NEWS ALERT

After 3 tough months battling the insurance company to continue coverage for Daphne’s medicine (N-Acetyl-Cysteine) that may partially reverse her disease…
I WON!!!
Excitement is an understatement 🙌🏻
My last update on this topic was winning the appeal to get a 3 month courteous fill to give me time to fight them, many hours on the phone with various agents, trying to figure out the right form and process, trying to get the doctors office to do their part because in the end I can do all the work except complete the final paperwork, so annoying but thankful they stuck it through with me and I will be sending them a sweet 🎂 treat for being so sweet (a little exaggerated 🙄), but my dad always taught me “you attract more bees with honey”!
A special shout out to Paula at the insurance company.  I fell in love with the first agent I made an appeal with several months ago but Paula took it to a whole new level and really cared and took ownership in helping me.

You may think it’s easy but seriously some people and processes are setup just to be difficult just to make you quit, I swear.  

Follow me for a minute here…. 

Believe me it’s true, in my own job I see it and even play off it ( sorry not sorry sometimes) so that is just the case in other careers as well.  

One thing that has always given me the edge to not giving up are those people that say “Who’s going to own it?  Are you going to own it?”  They are saying this knowing good and well they should be the ones owning it but you being the better person, steps up and says, yes I will.

In the back of your head your doing this, because 1. You’re so good at it 😜, 2. You will learn valuable lessons along the way, 3. At some point in the future it will benefit you.

So thank you to all those who have done this.  You have gotten me to this point.  Thank you for teaching me how to help others want to do this as well. My rule in dealing with the insurance folks is to be nice, courteous, understanding, listen, be realistic in what I am asking for and take ownership of the issue.  Paula did all of those things and more.  She called me everyday when she said she would, to check on the status and she made the final step to get this approved happen!  Paula my dear, you have just made my dreams for Advocacy for Daphne’s Lamp a reality.  

I think this shirt was made for me and every other Mito mama I have met!

***It’s not my most glamorous picture but I will be honest I am usually in pajamas by 6pm and tonight squirmy little Daphne would not cooperate very well but that’s my life.

This is just the beginning, I am going to D.C to meet with Congress June 29th and I will be pushing for the next big thing.

Until I have to appeal again in another year, I am making steps to make this fight even easier, stay tuned for those details.

This is for my daughter Daphne and what the future of those involved in with #daphneslamp will look like. I don’t take NO for an answer and I will put up one hell of a fight, so get ready. Get on board with the movement it’s going to be BIG!

#mitostrong 💚 #daphnestrong

One thankful and Happy Mama tonight 😊

Charlies Fight

This is very important to me and if you are a parent it should be very important to you as well.

There is a little boy in the UK with a rare Mitochondrial Disease that is being denied treatment by the government and the hospital that is caring for him.

The hospital is stripping the parents of their parental rights for this baby.

He was supposed to have his ventilator turned off last night at Midnight to die, but the parents have an appeal in with the Supreme Court who will make a ruling June 8, 2017, this is their last option.

The parents have raised the over 1 million pounds needed to transport him to the US to a doctor that is willing to try a life saving drug on him that has worked for other children.

There is a US Facebook Group where you can follow along called Charlies Army USA.

There is also www.charliesfight.org

Charlies mums facebook page is public:  Connie Yates

ITV London documented the parents fighting for their son you can watch the video here Charlies Fight

There are several petitions to sign, they do help so do it:

Petition 1

Petition 2

Petition 3

I would not lead you all down the wrong path, I promise.  Please take a few moments to sign the petitions and follow the facebook groups.

This issue and disease hits home.  I would have to die before I would let anyone tell me how they were going to care for my child let alone tell me they were going to kill her!

If you have any questions let me know and I can get them answered.

xoxo Desiree

 

 

Ear Tube Surgery Update

Daphne’s surgery went well, so Thank You for all your thoughts and Prayers!

She was quite pissed at the Nursing staff yesterday for touching her even if it was just to put an ID band on her, so you can imagine when they had to take blood for testing it did not go well. 

All the Pre-OP precautions takes longer than the actual surgery which was less than 10 minutes. 

In the recovery, Daphne was just as mad if not even more so since we were not with her when she woke up but we were very soon after.  She took a bottle, ate some oatmeal and banana and we were discharged by 10am.

I hope that the tubes work and she can be infection free!

xoxo desiree

Pre- Surgery Photo

Prayers Needed

For all you prayer Warriors out there I would appreciate one for Daphne on Monday she is getting Tube Surgery on her ears.

She has been suffering from ear infections almost weekly and we had this scheduled once before but had to cancel it because she got croup. 

This is a standard normal procedure for normal kids but for Mito kids the stress of the anesthesia, surgery can all throw her Mitochondria into a panic.

I had to dictate to all docs involved how it is going to go and I will still have to make sure the pre and post op bloodwork and drugs used are all kosher, since they screwed it up for her last appointment. Geesh, healthcare these days is bad, bad. Once I calm down from the week I had I will write about it but write now I have nothing nice to say, so I won’t say anything at all. 

Geographic What?

Well 2017 has not been so kind to us health wise…yet!

I got sick New Years Day and I am still sick.  All of southern California I think is sick with the same crud.

Bleh!

Daphne has been feeling meh for the past few days and it turned into something yesterday with a cough, and low grade temp.

Yesterday evening she spit up at therapy and then after she woke after going to bed for the night puked a little of her dinner up but then ate 3/4 of a banana and was wired for hours.

Till about 1am that is.  Luckily it was Rich’s night [insert snarky smile]

He said she had trouble breathing, swallowing and coughing and her temp was still hanging around so off to the doctor we went today.

Croup!

A little oral steroid and hopefully a couple days of rest and she will be ok.  Fingers Crossed!

We have a very busy weekend ahead and actually for the next couple of weeks so we cannot handle a sickness slowing any of us down.

Adelaide also complained of sinus pressure last night and that kid is the one that can really not get sick since the craziness involves her…

Soccer Tournament Two Weekends in a row with a Cheer Competition in San Diego Sunday..she needs to be in tip top shape (literally)!

She is not a fan of the Neti-Pot (I love it!) nor does she like the steam inhaler thing, so a little vicks, saline spray to clean her nose and off to bed she went, can we say Placebo effect?!

Hopefully she just wanted some attention from the rest of the sick folks in the house.  Rich has this as well but not as bad as Daphne and I.

While at the doc getting examined I asked again about her tongue the red spots and white areas and that I cannot brush them away but she does not seem bothered and the doc said you know I think she has Geographic Tongue… ummm what?

Well it sounds right and the pictures match up to Daphne’s tongue and the side effect is sensitivity to salt and acidic foods…..ding ding her mama has this as well.  I do not have the splotches as much as Daphne but I cannot handle salty food AT ALL and acidic bleh.  Probably why I have not loved fruit that much.  It makes my mouth RAW.

This is normal and nothing to be done about it just avoid the foods that bother you.

We are sensitive gals, what can I say.

Any tips you have for good organic, non gmo, no sugar, no crap vitamins (gotta stay with the trend)or steps to boost your immune system, I am all EARS!

xoxo Desiree

 

 

 

Pirate Baby

It’s not like she doesn’t battle with enough.

Daphne had her follow-up with the Neuro-Ophthalmologist this week and I wanted to discuss something we noticed a little over a month ago that we just called “Wonky Eye.”

We talked to her regular Neurologist about it but he could not get her to repeat it which was good because it was minimal but it has been more apparent lately and I even grabbed some pics to show the doc in case she could not get her to do it.

Now she has what she calls drifting outward which is common in patients with neurological conditions.

So we will try to correct it and strengthen each eye with Patching Therapy (1 hour per day per eye), maybe glasses but right now she will rip them off and eat them…..ABSOLUTE last case scenario is surgery.  We will follow-up in 2 months to check her progress.

I have ever said I HATE HATE Mito and wish it did not exist.  This is simply not fair!

Wonky Eye on the Right

Go to

I have been very busy lately and have not even checked the Hypotonia Group I am a member of but amazingly enough when I do there is ALWAYS a post that pertains to a thought or an immediate need I have.

A mom posted about this product and I think it is so clever.

I am can’t wait to get one and try it out.  They have some other really great products on there as well.  I love this as well (so versatile and compact).

I get really irritated when my husband and daughter just lay Daphne down next to them while they do something else like watch TV or read a book.

I keep telling them she needs to be upright to play not laying there like a vegetable.  She needs to be engaged and interacting and learning as much as possible.

Of course just laying her there is easier because she can’t scoot, fall over or require much attention.

Don’t get me wrong there is a time and place for laying flat and floor play to help her rollover and push up with her arms but, not on the couch or the bed.  Those surfaces are too soft for that.

I hope you can share this site with other families that may benefit from this.

XoXo

Desiree