One BLESSED mommie

Friday, May 2, 2014

~More of Gods Handiwork~

God is ALIVE and He is at work-

RIGHT HERE.

He is moving and working within our girls-

and it is AMAZING!

So, before I share the Miracles-

I like to start with some background history....
(just so you can see how AWESOME it really is!)

Denalli was struggling as a baby to keep the weight on. She got very sick- had a couple of hospital stays, and had to get a g-tube placed around 18 months of age. Since then (for the past 5 1/2+ years) we have had to prepare a formula and other supplements for her, EVERY NIGHT- then hook her up to a pump that would administer it to her all night long. Generally- one parent would get kids ready for bed and the other would get Denalli's formula ready... EVERY NIGHT. There were a couple of rare times that the pump would not work or we would forget to turn it on, and Denalli would not get her formula. In return- she would wake up and be very sick. The last time this happened- we ended up in the ER because she was puking blood.... in short-

Feeding tube = MAJOR DEAL.

But- MIRACLE #3-
( read about the first 2 miracles- here)

NO MORE FEEDING TUBE!

We just gradually stopped giving it to her because of her appetite increase, and we have never looked back.

PRAISE THE LORD!!!

It is JUST AWESOME!

She is doing so well!

It has been a HUGE life change for her.

She can now go sleep in her sisters bed,

or sleep on the opposite side of her bed,

or sleep on the floor... or

She can sleep wherever she wants!

She is no longer "tied" down.

It is so weird for Casey and I to be able to tell her to "go to bed" - knowing she can do so by her-self!

It might sound silly to you-

but it is a BIG deal here at the Voss home.

:)

Onto Miracle #4-

Background story:
Denalli has an AMAZING power-chair that was purchased for her through fund-raising and support from our community. It is the Permobil K450 MX. It can go from the regular sitting position, all the way down to the floor. Our hopes in getting her this specific chair was that, she would be able to get IN and OUT of it by her-self. Well, no matter how hard she tried before- she could never get back into the seat...

that was until last week!

You can see for your-self...

Enjoy the following video and PRAISE GOD for his strength!

Click HERE

Video name on YouTube: Denalli's #4 Miracle

It is very encouraging to see Denalli's strength increase along with her abilities!

All things will be restored in God's timing...

Not our timing.

Not on our schedule.

It's all in God's hands...

Thank you for your continued prayers.

We feel them-

We are seeing them answered right before our very eyes...

~GOD BLESS~

~*~One BLESSED mommie~*~

Saturday, April 26, 2014

~On the Heart~

Hey folks-
Just thought I would stop in and share whats on my heart.

Life is not fair.

oh- I guess you probably already knew that.

yeah, I did too.

But- sometimes, it just needs to be said.

sometimes, I just need to hear it.

and then I need to hear it again.

And then I need to accept it...

Tonight- I watched a little girl crawling.

I watched her fight and struggle to make her body work.

I watched as her determination shined through.

I watched her succeed and get to where she wanted to go-

(right to her daddy to give him a sweet kiss)

She is a little girl named Evie.

She crawled just like my Denalli.

Tears of joy and sadness and laughter and desperation

came out of me.

I guess I have never seen someone move just like my Denalli-

and yet-

I had never realized it.

there are no words.

there is about every emotion going on-

but no words to explain it.

And then I remember-

Life is not fair...

BUT

God is GOOD.

Even in the struggles I see in my daughter-

I still see a GOOD God.

His goodness does not change on my circumstances.

When my 3 "middle" children are running and jumping and playing like rowdy little kids-

while Denalli is left to sit and watch-

God is still GOOD and full of Grace.

When other little girls Denalli's age run around with everyone else-

while Denalli is left to sit and watch-

God is STILL GOOD and FULL of Grace.

No matter what circumstance this family is faced with-

God will ALWAYS remain GOOD and full of Grace.

Sometimes (like right now) we (I) just need to hear it over and over again.

This journey in life-

it is tough.

There are really good times and then there are hard times.

I am not writing a pity blog.

I do not need sympathy.

I do not need pity.

I just needed to state where I stand tonight.

I am very weak, and I struggle.

It is only by the Grace of God

that I am able to walk down this journey we are on.

No matter how strong you think I am-

I can guaranty you are seeing Gods strength, and not my own.

God is doing amazing things in our lives

and in the girls' lives right now.

But the flip side of that-

an intense spiritual battle.

what's that? you don't believe in a spiritual battle?!?

Start following God-

and you will see there is a dark side who wants control.

This battle brings on nights like tonight-

where my heart just aches.

I know I serve a good God.

I know He is gracious,

and I will leave my pain at His feet.

-Thank you for your prayers-

~One Blessed mommie~

Monday, February 24, 2014

~ God At Work ~

Home...

We have been home for a little over 1 month now.

Some days it seems shorter, but other days- it seems like forever.

This post has been in the making for, well- the past month now...

I have had a difficult time trying to put words to our experience...

How do you explain the Awesomeness of God?

How do you put into words His presence?

How do words convey His healing?

How do words capture His love?

What I can say is that:

We are so humbled to be on this journey.

We are so humbled that God has prepared, and continues to prepare our hearts and lives for the miracles He has set forth before us.

We are in awe by His timing, His graciousness, and His plan.

Although many have not seen His miraculous hand in our daughters lives- I am here tonight to tell you a few of the miracles that have transpired thus far:

Firstly- you have to understand the nature of the disease we are dealing with...

SMA- Spinal Muscular Atrophy.

Google it, and you do not have to look very far to see the darkness that comes along with it.

Bottom line and the easiest way to explain it:
It is a slowly paralyzing disease.

okay- so with that in mind- I will go on...

The disease affects all the muscles in the body-

Your digestion system is a muscle group, therefore- digestion issues are a HUGE problem for SMA babies and children...

At 3 months old, constipation shows up in a fully breast fed baby. (both Denalli and Ryka)

Medicine and whatever we have to do is done, to keep the babies "normal". Soiled diapers were always a fight and always a struggle.

UNTIL... Miracle #1

In El Salvador God moved within Ryka and fixed her digestion issues. He said it would be fixed and since then- she has had a "normal" bowel movement EVERY DAY....

PRAISE THE LORD for dirty diapers!
(Trust me- you are not thankful for them, until you have to fight for them... then once they come- they become a blessing in your day. :) )

YAY GOD!

So now, Rykas digestion issues are in the rear-view mirror. Onto to the next item of business:

Bone Strength...

On our way back home from El Salvador, we had to make a stop in Salt Lake City. Ryka had her 12 month check up for the SMA Study she is involved in. (Since she was 1 1/2 months old, we have been flying her out every 3 months to participate in an SMA Study to help further the research on SMA. )

At every check, they do different tests and follow the progression of SMA.

One of the tests is a bone density scan.

Before I tell you MIRACLE #2,
Let me give you a few more historical facts...

1- Ryka has never crawled
2- Ryka can not stand up or bear her weight for more than a 10 seconds at a time
3- She has never sat up by her self
4- She has a hard time going from a sitting position to laying on the floor
5- She has never rolled over, sat up or stood up in her crib.

Basically- she sits on the floor, or we carry her around...

(don't get me wrong-We do work with her on a daily basis, trying to get her to do all the things listed above, but she is unable to do them on her own.)

Okay- Just keep this all in mind- (Also, note that moving and muscle strength builds bone mass.)

So- normally, when the bone density scan is done, the bone mass only increases at a minimal rate, or sometimes it decreases.

When the scan was done at the check up- it had INCREASED SIXTY FIVE PERCENT.

Say what?!?

Yes- 65%

Can you believe that?

Even the lady that does the bone density scans on every SMA child that passes through the hospital at the University of Utah could not believe it. She said, " I have rarely seen this ever happen in a child with SMA".

While going through the test results and getting the paperwork ready- She questioned me several different times on what we were doing with Ryka to make the test results so outstanding...

I simply told her over and over again:

"We are praying over our daughter and God is healing her."

PRAISE. GOD.

Isn't that SO EXCITING?!?

Bone mass increasing at an unexplainable rate...

Digestion issues are no longer an issue...

Can I get an AMEN?!?

:)

oh, What about Denalli?!

Is that what you are wondering now?

Well- let me walk you through the miracles happening in her life!!!

History: Denalli hardly eats.

True fact: I can probably count the number of times she has asked for a snack and finished the entire snack.

She is never hungry....

She hardly EVER finishes her plate of small portioned food.

She basically has survived because of the G-tube that pumps her nutrition into her every night.

So- In El Salvador, the Lord moved within her digestive system and gave her an APPETITE!

Silly is what you might think...

BUT- take a child that has never felt hunger pains in the 6+ years of existence...

Then have that same child complain of a "hurting tummy"- only to be fixed by a full plate of food...

What is that called?!?

A MIRACLE!!

:)

Today, she eats everything we put in-front of her.

She ASKS for snacks!?!?

She eats SECONDS!?!?!?

WOW- GOD IS GOOD!

Ready for the next one?!?

MIRACLE # 2 for Denalli...

oh wait- I have to tell you the History first! :)

Okay- so, lung capacity in SMA children...

It's bad.

Low tone of muscle makes the chest cavity sink in and become smaller than normal. (One of the MANY reasons why simple winter colds are so devastating to our SMA babies.)

To say the least- Denalli's chest cavity was sunken in.

It was smaller and deformed.

Yes- it "WAS"...

Today- it IS NOT.

Today- her chest cavity looks just like Talla's and DallieJo's and Grayett's...

God has restored her lungs and her lung cavity...

THANK YOU JESUS!

God is so Gracious...

You see- this healing journey we are on- it is a JOURNEY.

I fully believe the Lord could pull Denalli up out of her wheel-chair and let her walk... but the healing goes so much deeper than "just walking".

The scars on our hears, the scars on our minds, all scars and internal problems do not go un-noticed by the Lord-

He is healing in every moment we live, every breath the girls take, HIS healing is happening.

The miracles that we have seen so far...

This is just the beginning...

Thank you for sharing in our Praise.

Thank you for sharing in our Journey.

The Lord is GOOD.

Seek Him.

Know Him.

I pray everything at we do and say will point back to our Heavenly Father above.

He gets the glory for all of this.

He has given us this faith, and He has given us this journey.

We are but humble vessels to share His light...

Monday, December 30, 2013

~~ El Salvador ~~

We are HERE!

We flew into El Salvador on Christmas day.

It didn't didn't seem like Christmas at all really...

Hot weather, green grass and ocean air...

defiantly not like any Christmas we have had before!

After arriving at the airport we made it through all the paperwork, then we loaded up a van and settled in for the 2+ hour ride ahead.

The sights are so different...

The bugs are few...

The temperature is perfect...

The oranges are plentiful...

The poverty is heartbreaking....

The way of live is casual and leisurely...

The people are friendly...

The Roads are narrow...

Everything is SO GREEN...

The Spaghetti is Spicy..

The Sugar Cane is at least 13 foot tall...

The food is good, (but I am really starting to miss my kitchen)...

Here are a few pics from the adventures we have had over the past few days. If you would like to see more, please Click here:

MORE FUN PICS!

Enjoy!!

Bananas still on the stem...

A woman cooking in her kitchen...

The Kitchen sink...

A delicious plate of food...

A ginormous tree that was SO beautiful.

The family that is being BLESSED by God's miracles...

A crab that is found under the rocks of the main land... they say it tastes REALLY GOOD... gonna have to take their word on this one...

A beautiful Waterfall.

Ryka sleeping in a hammock.

A wonderful friend that ate a red jolly rancher... I think it affected her purse, hair and tongue!!

A step back in time.

My beautiful little princess.

Throughly enjoying some FRESH coconuts!

After we drank all the juice out of the coconuts, the guy with the machete split the coconut for us so we could scrape the flesh right out and eat it too. SO YUMMY!

A pineapple BUSH... Who knew?!?

The spectacular View

Farming on the side of a VERY steep hill... I honestly don't know how they do it!!

A friendly Cow... Horns are a good thing in this country!?!

The collection of things found on our hike... Left to right: coconut, yellow flowers, pink flowers, red flowers, more flowers, small orange and a bigger (green) orange...