Saturday, July 19, 2014

~The Fight~

The Medical Equipment "Fight"... 

A few weeks ago, I had "seating and positioning" appointments with the girls. 

This is better translated into: "a VERY long day where the girls and I (and a helper) are in a small room with therapists, brace specialists, and equipment specialists, measuring every part of the girls' legs, arms, and body to determine what size of stander/walker/braces/ manual wheelchair, power wheelchair, they will need in the months ahead..." 

It is an appointment that my husband refuses to go to, because of the grueling process that takes place. 

It is an appointment that I have to stare down SMA and try and determine what will strategically be the best therapeutic option for my daughter(s) based on availability of insurance funding and personal funding.

An appointment where I have to agree to things like: "Yes- I will pay out of pocket (save, work, sell, and pray funds will be available) for the $4,000 manual wheelchair my daughter needs, so that she has an ever (impossible) chance of getting the power-chair through insurance; since insurance will only pay for 1 chair every 5 years..."  

An appointment that requires every part of me to stand for what will help make my daughters live a life full of "normalcy". 

An appointment that I would not wish on anyone... 

When all the papers had been filled out, all the measurements taken, all the options on the table- 

we walked out of the appointment knowing the fight for a powerchair had been started. 

Yes- a fight. 

A fight I know of - all too well. 

A fight that I had fought for our oldest daughter and a fight that I will start again for our youngest daughter. 

A fight for the powerchair that will help Ryka
 live her life with SMA to the fullest....

Do you remember? 

Do you remember the powerchair we bought Denalli... 

The one that the COMMUNITY rallied together
 and raised funds for?

I bet you were a part of getting it for her....

That powerchair truly changed the course of her life. 


The list of things she is able to do with that amazing chair and the things she does because of that specific chair goes on FOREVER!! 

The price tag on that amazing chair was (un-surprisingly) HUGE, 
But it has been priceless in Denalli's life.   


Let me say it again.... 


This is why I am willing and ready to stand up yet again, 
to fight the same fight for Ryka. 

I want to pause here and add something I have had a bit of a struggle with lately: 

God's healing and God's timing. 

I know God is working in her. We see it before our very eyes. 
BUT- right now- she is not able to crawl, walk, or even "move" really. She can squirm and flop her body down or over, she can kinda roll- with a lot of effort, but she is not able to get to things that she wants and she is not able to explore her environment. She can't even begin to keep up with her siblings, and before we know it- her second birthday will be here. 

We are waiting on God's perfect timing, but while we are waiting- 
we are still holding a child that needs extra medical equipment. 

Therefore- "the fight" for the powerchair and other medical equipment will proceed. 

I know the effect the powerchair will have in Ryka's life, and it will be worth every penny and every heartache and every sleepless night it takes to get it. 

So- when I got the phone call 2 weeks after the initial seating and positioning appointment saying that there is no possible way EVER, insurance will even remotely consider, potentially looking into possibly providing the chair for Ryka, 
before she is 4 yrs old.... 

You can only begin to imagine how I felt. 

I knew a fight would be inevitable, but I was really hanging onto the tiny thread of hope that there would be some sort of way insurance would help out. 

According to the therapists- the insurance has only provided ONE child in the state of SD with this specific chair. (and that also had a couple years of fighting insurance involved as well.) 

  We all know too well- what is desperately needed by insurance is not funded. 

But, Generally- what will "work", 
(I use this very sarcastically) 
is grudging funded, after tons and tons of medical documentation. 

Watch the following video and see if u have the audacity to tell me my daughter does not know how to control and use a power chair. (tactics that insurance uses) Mind you, this was one of the first times she was placed in Denalli's chair, and at the time she was only 17 months old.... Since then she has practiced a lot more, and continues to get better and better every time Denalli allows her to get in it.  
(Youtube link: ) 

So- now what?!? 


I need you help... 

I am NOT asking for handouts.
 (not yet anyway... ;)) 

You see, I have created a business to help offset the medical needs of our family. Click HERE to learn more about the purpose and story behind it and click HERE and check it out. It is called "One BLESSED mommie". 

In short: The business started when Denalli was in need of her powerchair. I wanted something that could help provide the girls with what they need without calling out for help and dipping into the ranch and family budget. Through  the OBM business, I have been able to help provide the girls with the extras they need and start saving for the bigger expenses

I have been extremely blessed by the business, 
and it has greatly blessed our family as well. 

But with the pending transactions of a manual wheelchair for Ryka, a power stander for Denalli, and a power chair for Ryka and a Family vehicle to carry all of us-
I am REALLY needing the business to grow! 

yes, yes- I could go out and get advertising....  But the money spent on advertising could be tucked away for much needed medical equipment. 

So, again- I am calling on you and humbly 
asking for your help. 

All I need is for you to help me get the word out far and wide about the business. I need you to share the store and my daughters' story with your friends, neighbors, relatives, acquaintances, co-workers, daycare workers, hairdressers and your pet gold fish (just kidding... unless he has a paypal account... ;) ). 

You get the picture! 

 I need the business to go viral!  

I need to be able to help provide our girls with the things they need to make their life as full as they can get. 

Here are some ways to get started! 

If you are on facebook- follow this link and "like" the page. Right now I am featuring a GIVEAWAY... once the FB page reaches 1,001 "likes"- some blessed individual is gonna have a standard Jewel Board show up on their door step! After you have entered the giveaway, please SHARE the page with your friends as often as you think about it, and encourage them to do the same!

Just "copy" the following link and "paste" it into whatever social media venue you are a part of- email, twitter, Instagram, gmail, yahoo groups, ect- Share Denalli and Ryka's story and 
then SHARE with your friends as often as you can!

Share, Share, SHARE!!! 

If you would like to put a story line about the girls in your local newspaper- contact the person behind your favorite blog(s)- (I would love to do reviews and giveaways)- put up flyers- Anything that will help bring in customers and income for the medical equipment needed.

If this journey with SMA has taught our family anything- It has showed us time and time again that anything is possible. 

It has showed us that when people work together-
 amazing things can happen...

I can't even begin to tell you the impact your help will have on the girls' lives and our whole family's life.

Thank you for that. 

~Blessings to you~

~*~ One BLESSED mommie ~*~ 

 if you have questions, comments, or advice- 
please let me know! 
I would love to hear what you have to say! 

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