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...
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...
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...
