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 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 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
One BLESSED Voss Family
