~My Baby~

How does the time seem to go by so fast?!? 

My baby is now 18 months old- 

She has stolen our hearts and filled our lives with more joy and more laughter than we ever thought was possible... 

Here are a few smiles to brighten your day...

Fresh air in the "Buggy" 

Animation is her thing... 

1 year come and gone

Corn on the cob never tasted so good! 

Super Baby for being in the SMA blood study. 

Making friends with the new sibling

Wrinkley toes from soaking in the tub

Yummy Toes!

Say "Cheese"! 

Again- Animation- it's what she does! 

Sweet little blonde curls

Loving Story time

Chocolate cake is the BEST!

On the way to church

Trying to decide if this is fun or torture...

Just a happy baby. 

Always ready to spread the Joy around! 

We are so richly blessed to have her in our lives! 

Enjoy the video :) 

~Check that off the list ~

How old were you when you first rode a bike? 

How about a trike? 

I think I was around 5-6 years old by the time I got the bike figured out. 

Well- the point is: 
Denalli is 6 years old and has never been able to effectively ride any sort of wheeled toy by herself, due to muscle weakness. 

Until Recently!!

While we were in SLC at the hospital, we met a little girl who had SMA type III and used a cute "lowrider" trike to get around. 

The little girl was nice enough to let Denalli have a go at it and this is what happened: 

Denalli rode a trike and was finally able to make it go- 

ALL BY HERSELF! 

YAY!

At the end of the video, the PT went and got a roll of tape and we taped her feet to the peddles and she continued to go up and down the hall countless times- enjoying the freedom of independence! 

We are currently looking into getting her a trike like the one she rode, so she too can enjoy ridding in circles on the cement and working her muscles! 

Here is another video of her enjoying a radio flyer trike at our host families house:

PRAISE GOD for HIS GOODNESS! 


Thanks for your support and Prayers~

One BLESSED mommie

~More Miracles- More Changes- More of Gods Goodness~

The two girls, a friend, and I just returned from a medical check up at the University of Utah in Salt Lake City. 

This time the visit to SLC was a "quick trip". 

We were only gone 4 days. (Sat-Tue)

It seems as though leaving should get easier- 

It would probably scare me if I went back and added up the days our family has been split up due to medical travel... 

We have had to do it many times and countless days. 

But it does not get easier... 

Actually- it gets harder. 

Having to drive down our gravel road with my child crying for her daddy and brother and sisters, and me trying to re-assure her- "We will be back soon", only gets harder every time we have to say goodbye.  

Casey also had a tough job keeping the middle 3 held together while they miss their mommie and sisters. 


Honestly- there is just not an "easy way" around this journey. 

Everyone is affected in some way... 

We just continually pray for strength, wholeness, and healing as a family.

~

This time a neighbor friend got to go with us on our adventures. 

She also had to leave her daughter and husband behind. 

Her daughter is 11 yrs old and this was going to be the longest that she had to be away from her. 

I am forever grateful for the sacrifices that others make, just to help us along our way. 

I have traveled alone with a 6yr old and an 18mo old, a wheelchair and a stroller, BUT the day is much shorter with an extra set of helping hands! 

This trip- we had connecting flights. 

This adds a whole new layer of chaos. 

On and off the flight, finding decent food at the airport, limiting the intake of germs, gathering up wheel chair, stroller and bags, arranging new seating for the next flight, ect...

Overall, the girls did a great job. 

We are so very thankful for the flights that are pre-paid. I am not complaining- just sharing with you part of our adventures... 

When we made it to SLC- we picked up our rental car and headed for our "family". 

It just so happened that they were having a big birthday celebration for a family member- so we were able to get in on the wonderful food and cheesecake. (yes- I consider cheese cake more than just "food".) :)  

The fellowship of friends and family in SLC has always been the highlight of the trips. 

It helps make all the medical appointments and procedures tolerable for the girls.

When preparing for a medical visit, we are always able to say- "Denalli- you get to go see Bapa and Gram, play with Ellie, and see the Bromleys and Pims!". 

Rather than saying- "Denalli, you get to go lay on a table while they shock your arm, poke you with a needle, make you do rigorous tests and draw blood!".

Perspective is everything... 


Our family in SLC is amazing- and I hope they all know that! 
;)


Sunday brought a nice lazy morning- filled with coffee and fellowship. (LOVE mornings like this...) 

We did attended the later church service at 11am. 

Going to the church our host family attends, is always a great experience. 

Later in the afternoon we went to the Pim's house to spend some time praying over the girls. 

God's movement is just amazing... (keep reading- more to come!)


Then later in the evening we headed to the Bromleys house for another B-day celebration! (we know how to pick the days! ;) ) 

Again- always good to be surrounded by people who love and care for you. 

I say that family is not always "blood related"... 

After more good food and ice-cream cakes- we headed back home, to our host family. 

Good fellowship, baths, things laid out, alarm clocks set, devotions read, checklist made, phone calls from home- and we were ready to face the day ahead that was filled with lots of medical tests. 


Even though the medical appointments are not always enjoyable- we are always happy to see the familiar faces at the hospital that also love and care deeply for our girls. 

We have been truly blessed with THE BEST nurses and doctors and therapists ever. 

We all were quite anxious to see the medical changes that have transpired in the girls since we came home from El Salvador. 

Before this medical trip, we already knew that God has been at work in their bodies. 

We could see a difference in the girls. 

Our friends and family could see the changes as well. 

So, to say the least- we were very anxious to see what the doctors would find! 

Both girls had regular check ups that include: Physical Therapy tests, muscle testing, nerve function testing, C-map (Shock test), Blood draws, and paperwork. 

The Physical therapy tests were first- Both the girls did great!

But Denalli did superb! 

Here is a video of her completing part of the physical therapy test... 

Be careful- her shear determination and heart to give it all she had- did not leave a dry eye in the room... :) 

If the video does not load: here is a link to see it directly on youtube:
 http://youtu.be/LQUHBcgCN88

Amazing huh?!? 


SMA is supposed to be a progressive disease. 

It is not supposed to get better... 

-BUT- 

Denalli has gotten stronger. 

She has not followed the "normal progression" of SMA. 

It is almost too much to wrap our little minds around... 


The rest of the testing went well. 

Ryka's tests came back normal. She still continues to have regular bowel movements without diet changes and medicine. 



Denalli's tests continued to show improvement and gains. 

Denalli increased around 1pt on the shock test. YAY!! 

Then in all of the muscle testing she showed gains in every part of the test!! 

And not just a few points... 

In some areas she gained 1.5kg!! 

This is a BIG DEAL!! 

It had been 1 year since she had any tests done and 


SHE GOT STRONGER. 


If you would like to see how medial visits usually go, feel free to go back and read our caring bridge site to see the proof! 

http://www.caringbridge.org/visit/denallivoss/journal


It used to be that on every medical visit, we hoped for minimal progression or a plateau. 


Now we are seeing STRENGTH. 



WOW. 


TRULY. 


AMAZING. 


GOD. 

We praise God! 

He is INCREDIBLE! 

 We will continue pray and seek God for a complete healing in both of the girls.

 We are anticipating to see great changes coming in the months ahead.   

We are seeking heavenly guidance in taking another trip back to El Salvador in the near future. 

We are seeking heavenly guidance in taking steps to do what is best for the girls and our family. 

Please join us in prayer... 

Much love and many thanks~
One BLESSED Voss Family 

~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~*~ 

~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~ 

~ 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...