Thursday, August 7, 2014

~ A FANTABULOUS Event ~

Oh my- where do I begin...?!?

I guess I wanted you to know that 
August is SMA Awareness Month. 

This means- the SMA families and those around us are doing lots of things trying to get information out about SMA as far and wide as we can get it. 

In fact: 

I am taking questions right now. 

If you have ANYTHING you want to know about SMA, our lives with SMA, what we do to face each day 
and obstacle in our way-
PLEASE ASK AWAY! 

There is not a "wrong" question and no question "too personal". We are open to sharing our journey and our story, so others can better understand our lives and our little journey. 

I will take each of your questions and then openly answer them as best I can. 


I look forward to hearing what you are wondering about!

To give a kick start: I want to tell you about the 3 types of SMA. (this info is from Ella's Wall)


SMA Type 1 Symptoms- 
Type 1 children are diagnosed usually before 6months of age, more often before 3 months of are. Symptoms may even start in the womb. Many mother later recall the baby not moving as much as the last moth or so of pregnancy. They are not able to hold up their heads, roll over, crawl, sit up without support, or walk. All of their muscles are extremely weak, with the weakest muscles being the legs, upper arms, and neck. Their chest may appear concave or very skinny at the top, with a big belly. Bell-shaped. SMA affects all muscle systems as well including sucking, swallowing, digesting food and excretion. Constipation is a common problems as is being able to control excessive drooling (secretions) and getting proper nutrition and calories for proper weight gain. 

One of the biggest symptoms for SMA type 1 is a quivering tongue. Ella's tongue always does little quivers. It is the only disease that this is present. 


SMA Type 2 symptoms~ 
These children are usually able to be in a sitting position without support, but often can not get there by themselves. They can sometimes crawl with bracing and therapy and on occasion may stand with braces. They will usually never walk. (Denalli was able to take 7 independent steps at one time while Ryka can not stand or bear weight at all by her-self) Feeding and swallowing problems are not common in Type 2 children, though they are still possible. The lifespan of a Type 2 child varies so widely, there isn't one! They could pass away at an early at, or they could live well into adult hood. As with all forms of SMA, weakness increases over time. 


SMA Type 3 Symptoms~
 In the beginning theses children are able to stand and walk but usually have difficulty doing so. They typically have a normal lifespan, however as with all forms of SMA weakness gets progressively worse and they usually will be wheelchair bound. 



So- Now you know!! :) 



Now- please ask some more questions so I can tell you more!! :) 






Next- I REALLY wanted you to know-


TOMORROW IS DENALLI'S 7TH BIRTHDAY!!! 


I still can't believe it my-self... 

She has grown into such a little lady with such a BIG personality.


Along with it being her birthday- 
it will also be the day that one of Our dreams come true... 

Tomorrow will be the day Denalli competes in her first
 RODEO QUEEN competition!!!! 


She will be competing for the 
Faith Stock Show and Rodeo Princess title!!! 


Awesome, Right?!?! 


On the day she was born- I started dreaming of the day she would ride a horse around the Rodeo Arena and wave to the crowd... 


 Sad to say, but that dream was sort of muted-
 the day she was diagnosed with SMA... 


But, then- a couple of days ago- it was brought out of the dark and is now becoming a reality!! 


Since riding a horse for the title is a MAJOR deal- 
How is this made possible?!? 


The coordinator of the competition is going to allow me to sit behind Denalli- while she rides through the horsemanship competition. 


Denalli will be in control of our trusty ol' steed, and I will sit behind her to be her "seatbelt"... 



I AM ECSTATIC! 



And SO IS DENALLI!



Denalli will also be modeling an outfit and completing an interview with the Judges... 



Dallie Jo is also competing for the same title. She is equally as excited and ready to go do her horsemanship pattern and queen wave around the arena. 
oh- and she has her little modeling walk down pat. :) 



It is gonna be a FANTABULOUS day.... 



Then after all the emotions and happy tears have been cried- 
We will enjoy the rest of the day and take in the nightly rodeo, and top it off with a live band and country dancing....


We are so blessed to live where we do... 



I can't wait to share pictures and videos of tomorrows adventures.


There is also some more Fantabulous news
 that will be "rolling" in soon.... 



But- it's late and tomorrow is a BIG day...




~HUGS~ 
One BLESSED mommie 

















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. 



Literally! 




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.   


PRICELESS.... 


Let me say it again.... 



PRICELESS.... 



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: http://youtu.be/SXwiBpFxrjE ) 






So- now what?!? 


Basically- 


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! 


~1~
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!


~2~
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! 


https://www.etsy.com/shop/oneblessedmommie



~3~ 
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 ~*~ 


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




















Wednesday, July 16, 2014

~ Dream BIG ~

Hey there! 

Before I tell you all about "the Fight" coming up in the next post, 
I feel like I needed to take you on a personal journey and give you a little insight and background about the business called:
One BLESSED mommie.



One BLESSED mommie 
was originally opened in March 2010.  


But, wait- let me back up a little bit more... 


The beginning of 2010 was a tough time. It was then I realized that the insurance was not going to pay for the Special power-chair Denalli desperately needed. It was an overwhelmingly big fact to face. The need for the power-chair and the price tag that went along with the power-chair was enormous. 

But- against all reasoning-
 I made up my mind that Denalli was going to have that amazing chair, that would ultimately impact her life so much. 


Well, as the adage goes- "If there is a will, there is a way"... 
So, "with scissors within reach and the sewing machine beside me", I began to make and sell cloth alphabets and letters. I was able to make several sets of alphabets and sold them through friends and through the One BLESSED mommie etsy store. 

By God's grace- I had friends and neighbors stand up beside me, and helped raise and donate the funds we needed to purchase the awesome power-chair for Denalli. 



It was truly amazing! 


Shortly after all the of fundraising had ended, I still felt like I needed an outlet for my creativity/sanity. 

I needed something to do. 
Personally- I needed to be able to help with the impending needs of our medically fragile daughter. I needed more organization in my life. And, in all honesty- I needed to be able to "control" something in my life at the time. Because, at the time- I felt like I was getting lost in all the diapers, dishes, 
appointments, medical learning, ect.. 
I just craved a place my mind could go to "escape" from it all. 
Even if is was just for a few minutes. 

A place I could share my ideas with the world 
and help someone else. 


I remember it very clearly- It was the middle of November 2010 that I created the original Jewelry Organizer, and November 30th 2010 that I sold the first Jewelry Organizer on etsy.


(don't laugh... this is where it all began... ) 


 Then in December 2010, I sold 5 more Organizers on etsy...
I was ECSTATIC (to say the very least...). 

Up until that point- my husband, some of my friends and family just thought I was plumb crazy... Seriously, it was so funny! I would excitedly tell them what I was creating and what I was going to do, then I would get the whole, 
"smile and nod" with the deer in the headlights look saying:
 "nice idea- but its never gonna work...".  

But, I did not pay any attention to that and charged on ahead. Countless hours were spent looking for better ways to do things, I would give away organizers to anyone that would take one- 
just so they could try it out, and give me honest feedback. 
I was bound determined to make things work.


I was told to "Dream BIG" as a kid- 


and "Dream BIG" is what I did. 



Well- lets fast forward a few years a few kids and a couple hundred Jewelry Organizers.... 

Enter into the scene: Ryka Kathleen
and SMA diagnosis 1 week after birth... 
(This will probably always be the 2nd hardest time in my life...)


After we were able to work through the initial realization and the weight of the diagnosis became tolerable,
 I started to think about all the things Ryka would need- 
just like Denalli.

I knew that our ranching lifestyle would not always be able to cover the costs. Therefore, I needed my business to grow, so I started doing some advertising on blogs and giveaways and such, to continue to grow the 
One BLESSED mommie business even more. 


The advertising did help. 
But it also took away funds that I was saving to be put toward a vehicle down-payment, or medical equipment for the girls.  


So, as time went on, my shop continued to grow little by little. 
I put more time into creating new items and 
I got better at what I did. 
Eventually, the first product I made (see picture above...) evolved into what it is today...





It is a complete Jewelry Organizing system that eliminates tangles, beautifully displays the Jewelry you own, and
 (the best part) allows you to "grab and go". 


But, in the end- it is much, much more than that... 


It is part of a down payment on a family vehicle.

It is Ryka's independence in the shape of a 
manual wheel-chair and power- chair. 

It is Denalli's leg splints and 
extra things and vitamins to help her thrive. 

It is my way to help this family share the weight of SMA. 

The One BLESSED mommie shop has been such a blessing!!!

 I have been able to ship hundreds of Jewel Boards to every state in the USA, and all over the world. 

It has helped the SMA finances flow. 

 I have been able to give to charitable SMA organizations 
to help CURE SMA.

And I have been able to share my creativeness with the world! ;) 





In all sincerity- My heart in this Journey of life is to help others.

 A time may come when we can't handle the financial burden of SMA alone-

 but for now, 

we are going to do our best, 
 we are Dreaming BIG, 
and leaving the rest to God. 


Stay tuned for "the Fight" and a personal favor! 





One BLESSED mommie 



Click HERE for a direct link to the shop 
or see tab at the top of the page. 






~In Question~

Here it is: 
Another day in Paradise at the Voss residence. 

Kids up, fed, dressed, laundry going, dishes done, floors swept, laughing and playing in the background.... 



 and big question(s) on my heart. 




When is it time? 




When is it time to go back to El Salvador? 

When is it time to get Ryka her manual wheel chair? 

When is it time to get Denalli a power stander?

When is it time to get Ryka a power-chair? 

When is it time to move? 


All life changing questions, with un-determined answers. 

We are seeking the Lord in these issues- 
and ask that you would pray along with us. 

We would like to take the girls back to El Salvador again and be immersed and encouraged by the faith and teachings there.

Ryka is needing a way to move around and do things on her own.  She is "borrowing" Denalli's equipment, but it is too big for her and (of course) Denalli is still using the equipment. Consequently- she really needs her own equipment! 

The dream of getting Denalli a power-stander has never went away. Obviously, she would GREATLY benefit from being up-right just like everyone else, we just have to continue to find a way to make it happen. 


When do I start "the fight" for Rykas powerchair?!? 
God is working in her. This we know.
 But, I don't know when the healing will fully take place. 
I am not doubting God will heal her.
 I am looking at her and seeing a precious daughter that can not move, and wanting to give her that independence if I can... 
the next post will cover starting this fight... 

and then the last question: "the Move" 
When is it time to move our family to a warmer climate where the girls can thrive and enjoy a full life? Here in SD- they are kept inside 6-8 months out of the year, due to the cold temperatures. They are not able to do the therapies that they need, and this way of living is not fair to anybody. 


Yes- yes. All in God's timing. 


I get that, and I do my very best to follow His lead. 


But - I am not one to stand aside.


 I am here to make a difference. 


And with the Lord's direction- things will happen. 


With your help and prayers-
 we can answer some of the questions looming over our heads! 



Stay tuned- I have a favor to ask of you. 



Blessings~

One BLESSED mommie 









Saturday, July 5, 2014

~ Happy Cows ~

I love being able to get away from the house for a few minutes and go look at the rest of our "family".
These are some of our baby mama's. They will provide our family with cash flow next year and give some lucky person a hamburger. 



Their life is pretty great right now...  
It includes:
 eating- posing for pictures, and hanging out with the boyfriend... 



Some of the girls even have a sense of humor and like to throw in a little "photo bombing" !



See, They are all naturals! Line up and say "cheese"!! 
Piece of "cake" really... 



When we came by the big ol' boyfriend- 
Our neighbor thought he needed some TLC as well. 



Pasture bulls are not generally this sensitive, 
but this one really does have a soft side. 



I am pretty sure our neighbor could have had a full time job scratching him behind the ears, 
but like all pasture bulls- he had a few jobs to do... 



After looking through the cattle- we took a drive to the top of the hill and soaked up the view. 



I love this country- You can literally see for miles and miles and miles and ... you the idea. 



Its fun to imagine the history that took place on this land. 
The wagons, the cowboys, the indians- 
if only the land could talk...  



Gotta love this land of the FREE, because of the BRAVE~

Happy Independence weekend everyone!

~*~ One BLESSED mommie ~*~ 



Thursday, July 3, 2014

~Sunshine and Wonderful Rain~

I thought I would share some more pictures that make me smile... 

This Spring/Summer has been such a dreancher here on the ranch. 

Every thing is as green as it gets. 



The country side is a site to behold. 




We have had a few calm days where our road just starts to dry out... 



And then another rain cloud rolls over and makes it all gooey again... 
I think we have had more days with rain this season than we have had in the several previous springs!



 This is a seasonal crick- On a "normal" day- it's bone dry... 
I believe 2+ inches of rain had just come our way! 



This green lushnesses goes on for miles and miles... 
(lushnesses- ie: the state of profuse lushness, 
you have to add an extra "es";) )



And the sweet yellow clover... 
I bet them bees are going haywire... Sweet times ahead!  




And the BEAUTIFUL clouds and sunsets... 



I took a walk outside and watched this little 
storm move right along. 




The clouds were spectacular.





And the night was so peaceful and calming to the soul... 
As the cool evening moved on, I watched this cloud open up and pour out it's goodness on our neighbors. 
While watching- I hardly saw any lightning in any of the clouds.



So when I looked down at my phone and saw this- I thanked the Lord above for his perfect timing! 
(though I doubt the neighbor was thanking God at that
 particular moment... ;) )


Blessings~ 
~*~ One BLESSED mommie~*~