Tag: newphase

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 😊

NeuroMet Clinic

All has been relatively calm in the house, except…..

Daphne is TEETHING!

Adelaide has a high fever (hopefully just a cold but she had the stomach bug over 4th of July weekend)

AND

Daphne has been partying with Rich late night a couple times this week.

In all seriousness Daphne has been teething for months.

I asked another Mito mom if she thought it took longer than normal for her daughter’s teeth to come in and she said yes.  Her daughter is 21 months and she only gets about a week break in between teeth.  She is currently working on her molars.  I do not know how Daphne is ever going to get molars.  Right now at least 3 of her top teeth are coming in, probably all four but I can see the points of 3 of them.  Her gums have been red and swollen since before her 1st Birthday.  I feel for the little girl but for the most part she has been happy, she just has her days.

Yesterday she was fussy all day at the sitters and did not sleep, last night she was up from 1:30-4.  Today she slept at the sitters and I hope she sleeps tonight.  The teeth look like they have made some progress.

It’s a real bitch when your body sucks at making energy and you require energy to push your teeth through.  Mito SUCKS!

Doctors….

We haven’t seen them in awhile.

It’s annoying and causes anxiety and lots of questions.

I also think its been kind of nice.  We have gotten to settle down from all the running.

We go to the doctor next week.  Our 1st appointment at the Neuro Metabolic Clinic.

Here starts the “Care”

So I will remind everyone I am NOT on Team Metabolic Group.

They really annoy me and I try my best to be polite and respectful but I am starting to near the end.

I like or did like our Genetic Counselor but she is also annoying me.

Like I said we have a lot of questions and have sent various emails so I compiled all of them and sent one collected email with all remaining open items, and then Rich found another research article and passed it along with some questions and the doctor replied perhaps they can wait for an appointment because it is becoming difficult to keep track of all the emails and effectively treat the patient.

Perhaps I am bias and selfish but I just compiled everything for you and items were addressed except the latest article Rich just sent them.

My guess is they are embarrassed that Rich is finding research, (stay tuned for a post on this), that they know nothing about.  They do not acknowledge the articles he has sent because they do not know.  It is beyond frustrating.

It’s like politics in a company and I deal with that during the day, I cannot and will not have that with my daughter and her health.

I did take a little work approach with the Docs and created a RAIL (rolling action item list) to have every single little comment, issue and question we have addressed and it will remain open until I decide it gets closed.

Some may think I am OCD but I just like things a certain way and to be completed and not overlooked.  I do not see OCD.

So the latest email asked about which Neuro we will use the 1st, 2nd or 3rd one we have seen or a new one in their group.

We did not like Neuro 1, Neuro 2 was great and the biggest advocate for Daphne and one of the best physicians we have seen to date but he does not know anything about Mito, Neuro 3 is Dr. H and I do not like him much but he is like a Mito Genius per the Mito Community but I do not want to rely solely on him so I agreed to the Neuro in the Clinic for now.  After all we have to meet them first before I can hate them 😉

During this appointment Daphne will get more bloodwork and a skin biopsy….eek!

I have put the biopsy off for awhile now.  I mean who wants to hold down their baby and get a hole punched out of them.  Yes she will be numb, but still I cannot even stand for her to get her blood drawn.

We will also talk to a variety of specialists and maybe just maybe the Medical Director of the Group to understand all the supplements we have asked about and they just gave the dose and said start them 1 week apart without any conversation.  The total number of supplements would be 8, really docs, really?!  We have trouble getting two into her.  The 3rd has been a nightmare and pretty much non-existent.  We may be breaking them down and I do not feel bad about it at all.

This is our baby.

Our sweet little 13 month old that has a stupid horrible disease.

That has a group of doctors that do not seem to care.

That seem to just act like they are maintaining her comfort and not trying to cure her.

That have the most minimal hours of any doctors office I have ever visited.

I do not know what they do when they are not in appointments, which is only like 2 days a week half days.  They better be researching and exhausting all means to help their patients.  If I find out any different they will certainly wish they had never met me.  I am working very hard at making connections in the Mito Community, setting up a family social in the area and getting a grand rounds for families and doctors.

God give me Patience and Strength!

So stay tuned….

Desiree