Detour of Events

So I thought I would be writing about our trip to El Salvador, but instead I get to tell you about long nights, de-sats, and ways to make the hours move along.  

Denalli caught a bad virus that took a turn for the worse on Christmas Eve.  We had a long night of therapy sessions- but kept her going strong. On Christmas Day she did okay, had a couple of episodes, but made some good memories and had a good time. Christmas night was another long night full of de-sats, coughing, treatments and a little bit of sleep. The day after Christmas Denalli was a lot more tired than usual, had more coughing attacks and spent most of the day close to her machines. That night at 3am, (the 3rd night we had been fighting the sickness) Casey and I decided enough was enough and took her to the ER in RC. 

She received a loading dose of steroids that dramatically changed the way she was feeling. By that night she was doing well, and we had the option to go home or stay for observation. At one point we were going to go home- but instead changed our minds due to "mommie instincts" and opted to stay for observation. We are so thankful we did, because Denalli ended up sating low, and needed suplimental oxygen. 

That brings us up to speed to today. 

Today was a fairly good day. She had a good morning- colored pics, water colored more pics, watched movies, and took a nap. During her nap- her oxygen levels dropped below the comfort levels and medical intervention helped bump the numbers back up. 

Tonight she is resting peacefully. Her numbers are okay. No suplemental oxygen is needed yet. The attending doctor today has had a history with SMA kids from Iowa, and is in no hurry to send Denalli out the door. 

As with every hospital stay- we learn more and more about the complexity of this disease and how to be Denalli and rykas best advocate. We are so vey thankful for the wonderful hospital staff and all that they do to make us as comfortable as possible. We really have no idea when we will be able to go home. It all is a day by day and night by night sort of plan. 

We ask for prayers for healing and restoration for Denalli. She is such a fighter and even the Doctors are so impressed with how well she is handling  this virus and how well she has done in the past. 

Please also pray for the 4kids at home. This is so tough on them. Knowing Denalli is not feeling good and having both mommie and daddy away makes a long couple of days. 

We are ao very thankful for Casey's family that came to see us for the holiday and stayed extra days to watch and care for the 4 little ones at home. 

We are so thankful for a gracious God that is patient and kind and healing. 

Thanks for following along- 

~*~ OneBLESSEDmommie ~*~ 

Ps- to our "angel" family that sent Christmas cards to the family and is near by- please give a call! We would love to see you! 

~*~ Following God's Calling ~*~

God has called us and we are following His direction: 

We are going back to El Salvador to continue to seek Gods healing for our daughters and family  

Lets back up a bit and give you a little pre-text- 


  We went on our first BIG Missions Trip
about 9 months ago. 

Casey, Denalli, Ryka and I flew down to El Salvador for  2 1/2 weeks and went to a church where we were prayed over. 

We came home with medical proof that God was working in the girls and healing their bodies.

It was beyond AMAZING.... 


It was MIRACULOUS! 


Do you believe in miracles? 

Are you one that believes in miracles,
 but then puts a limit on God's blessing/healing?


When you pray, Do you say-
 "God, I believe you can bless me financially, but I doubt you can heal a sick child...."

Why would you pray and ask Him for something when you really don't believe he can provide it for you?!? 

Just something to think about... 

Anyhoo- Over the past 9 months we have seen miraculous healing in the girls' bodies.

Amazingness...  

So- We are so anxious to go back to seek His guidance and get a fresh perspective on His grace and goodness. 

Because- honestly- 

Even though the past 9 months have been absolutely full of blessings- 

they have probably been some of the toughest times as well. 

In El Salvador- we were surround by Gods people that lived and breathed His goodness. 

They absolutely did not doubt what God could do in any way, shape or form. 

Everyday in El Salvador- They simply Seek Him for who He is. 

So, imagine us coming back state side with the amazing news we had, only to be greeted with dismay and closed doors. 

Why am I telling you this?



Because- we have been called again to go to El Salvador and seek God and His promises. 

This time, we will be taking the entire family. 

We leave November 10th and will be home the 25th.

Yes- for 2 weeks and 1 day we will be submersed
 in the El Salvadorian culture.

We will be taking clothes and bibles down to the people in the church and the communities we will be visiting. 
If you have ANY clothes -
 adult/kid/baby, XLarge/ Small / Tiny- 

Basically- Any GOOD clothes that you would like to donate- 
please let me know and I will pick them up!

ALSO- we will be passing out bibles in the communities. 
 We would like to take down 300 bibles and need around $350 to purchase them. If you would like to donate to the bible fund- 
please send donations to:
Voss Bible Fund
 19879 165ST
 Faith- SD 57626)   

I want you to know this, Because I want you to be a part of it!


I want you to see the power of God and His hand working in our daughters. 

Friends- its too amazing for you to miss. 

It's too incredible for you not to see the process of His healing. 

We leave in about 1 month!! 

 Casey and I have the peace and assurance in our hearts that gives us to courage to take this next "leap of faith".  

Please be in prayer. 

There is so much to transpire between now and then.... 

We know God has brought us here in this Journey of life and we know He will carry us through.  

Be encouraged my friends. 

We serve a God that does not put limitations on us- 
so we need to stop putting limitations on Him.

Blessings~

~*~ One BLESSED mommie ~*~ 


PS- We plan on bringing back more El Salvadorian Cafe'. If you would like to purchase some- It would be a financial blessing for our family. Like before- the cafe' will be sun dried and fire roasted for a warm, smooth taste.  

Cafe' will be $13-15 a pound. 
Please let me know how much you would like! 

THANKS!! 

~*~ THE BIG ANNOUNCEMENT ~*~

The BIG ANNOUNCEMENT IS HERE!

I am so excited to share with you what was inside of the 

 FREIGHT TRUCK...

I asked for you to guess what it was
- and most everyone guessed it was a wheelchair... 

Although- it could have been a lion... 
That would have been awesome... until it got hungry! :-) 

No doubt- the wheel-chair guesses were on the right track...


Although- 
it is not exactly a Wheel Chair
- 
But, it is a piece of equipment 
that will help provide Ryka with her Special Power Chair. 


The very special package came all the way from California!

It is a package that we have been praying for and searching out,
 over the past several months, 
and God carefully laid this one out before us.

Prayerfully, it will be the main source of income for Ryka's power chair and freedom... 

Do you really want to know what it is!?!?

AN EMBROIDERY MACHINE!

With this special machine-
I will be able to custom embroider and applique' about anything you can think of. 

Its pretty awesome!!


Understandably- this will not be an over-night solution to getting Ryka her independence. 

But- it is a self sustainable option 
that I can do here at home with my kids. 


Right now, my goal is to have the money saved in 2 years... 
(or less!)  


I have a bit of a learning curve ahead of me- 

But on the other side is hope for my daughters' freedom!!


With all this being said-

I am looking for potential customers 
to give me a chance at fulfilling their embroidery needs. 

I plan to have the machine up and running and ready to take on custom orders by October 15th. 
( or sooner!!) 


Sample work will be displayed shortly... 


In case you were wondering- 
Here are a few things that I will be 
able to customize and personalize for you:  


~*~ Coats, Jackets, Caps, Bath Towels, Kitchen Towels, Signs, Bags,  Blankets, Bibs, Shirts, Sweatshirts, Clothes, Jerseys, Uniforms ~*~


You name it and I will do my best to customize it!


Christmas is right around the corner...  
just think of all the personalized gifts I could help you
 give this year! 



The price list and clothes suppliers are coming shortly-
 Please stay tuned!!

 
~Thanks so very much for following 
our adventurous Journey with SMA~ 


I look forward to making your Christmas Season 
Personal and Customized!! 


~Cheers~

One BLESSED mommie 


www.OneBLESSEDmommie.etsy.com 

Dream Came True!

Okay- so last time we spoke, 

(over a moth ago... oops! Where did that time go?!?) 

Denalli was about to turn SEVEN and she and DallieJo were going to try out for the Faith Stock Show Princess Contest.

Well- to say the least- 

The entire experience was so neat and wonderful and 

fully emotional... 

You see- Denalli can ride a horse, but not without help. 

And generally in a princess competition, the princesses have to ride by themselves. 

BUT- 

something SUPER SPECIAL happened...

 the coordinator of the event let Denalli be a part of the experience, regardless of her physical limitations.

It was a Dream Come True.... 

And beyond that- 

it was a huge moral booster for Denalli. 

It showed her that that she can be a part of "normal" activities, regardless of her power-chair. 

So- without further delay- 

Here are some snapshots of DallieJo and Denalli Living LIFE! 

~The two princesses all dolled up~ 

~Just being sisters~

~If any of you personally know Denalli- this is the expression she uses when there is so much excitement built up inside of her, that she can hardly stand it. Basically- it equates to any other child doing an extreme happy dance... ~

~ I don't know about you, but I see an amazing young girl that is going to Change the world~ 

~All the cute little princess contestants~ 

~One Proud Daddy and His Beautiful Princesses~

~Mommie and Denalli before the horsemanship class~ 

~Daddy giving last minute advice to the princess~ 

~ This is DallieJo out in the arena. Her horse gave her a little bit of trouble, but she stuck with her and succeeded! ~ 

~DallieJo talking to the judges and answering their questions.... 

Okay- who am I kidding?!? This is DallieJo sitting in front of the Judges and smiling at them while they ask her questions. Talking to people is not her forte' right now... ~

~Denalli all excited to go ride through her horsemanship pattern~ 

~This is the DallieJo that keeps us laughing all day long~ 

~ DallieJo- you are an amazing little Cowgirl ~ 

~Our SUPER Amazing Little Princess~ 

At the end of the day- Denalli ended up winning the 

"Miss Congeniality" award. 

This was so very special- because they only give out one of these awards throughout the entire princess/queen group, 

and there were 13 girls that competed. 

"Miss Congeniality" was voted on by all the other girls, and Denalli seemed to win all their hearts... go figure! ;) 

She received a pink backpack and other little treasures that topped off the days' excitement. 

Denalli also won 2nd runner-up, which equates to 3rd place. YAY!!

DallieJo received a goodie bag full or treasures and a day packed full of learning adventures.

This mama couldn't be more proud... 

To the coordinator and judges of this event- 

a HUGE heartfelt thank you, happy tears and gratitude that I can't begin to express in words... 

You all were Amazing! 

I am so very grateful for the opportunity to have had both my beautiful daughters be a part of the evert and I look forward to many more queen competitions in the future!!

~*~*~*~

Now- I have some more BIG NEWS to share.... 

This Truck Pulled into our driveway and Delivered a package.... 

Any guesses on what it could be?!? 

Stay tuned for the BIG ANNOUNCEMENT thats going to make more Dreams Come True!! 

=) 

Hugs~

One BLESSED mommie

~ 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 

~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!

https://www.facebook.com/OneBLESSEDmommie

~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! 

One BLESSED mommie etsy store- 

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!