One Grape Day

* Health  * Happiness  *Home

I have many many stories and pictures to share of Home and Hospital times (Make a Wish to Florida too) and hope you will join me on my blog often as I share this incredible girl and her faith with you!

We have had the absolute best summer imaginable!

We have learned that each day is a gift!

A beautiful gift from God.  

Each and Every day - be it hard or normal, adventurous or bitter-sweet  

The good - where we make memories and take adventures, laugh and play games, sew and sing, bike and hike.

The hard and bad - where we  also make memories and watch movies and read books and give back massages and foot baths and try to distract from the pain or sick.   

A common thread of every day is Faith and Hope.  The Faith and Hope of an Eternal Family.  God.  God is a constant.  He is with us - through His Spirit that is in our hearts. And grows through Scripture, Prayer and Primary Songs.  They see us through.

Can you believe all this hair?  

River is on home chemo - 5 days of chemo - cycle every 21 days.

River rarely has pain these days.  And minimal nausea.  How blessed we are!

Here is her 1st day of school:

River is in 4th grade - she made the 1st 2 weeks of 3rd grade and the last few days for just an hour or two.  River's class theme:  pirates 

Silver's theme:  cowgirl.  

Silver even had a cowgirl outfit for the first day of class!

This is my big helper and biggest sister while River and Silver is at school.

Summer wants to be called Kit from now on.  Kit is the name that we almost named her.  

It fits her perfectly -  cute, fiesty and cuddly.

Summer's birthday is August 29.  We decided to keep her home for one more year of Preschool.  They grow up so fast - I will cherish every day I get with this one.

Joy School and Kindermusik!

Tanzi and Summer.  

My two sweetie pies - I am so blessed to be their Mommy! 

We have learned to make adventures - there is no time like the present to make memories.

We were driving home from a ward campout when we found this little gem of a spot - a culvert under the road turned into a wolf symphony.  

VIDEO:  River, Silver and Colt 

Wolf Symphony

River always has her camera with her.

River loves to take pictures, videos and to keep a record of the things she sees and experiences.  She is an example to me - every day before bed she reads her scriptures, says her prayers and writes in her journal.  She calls her journal "My Childhood"  She writes everything in there:  Where we sit in church, her feelings, songs that she makes up, etc.  She also keeps a scripture journal where she writes down by topic her favorite scriptures.  

She still has a drain from her last surgery: #7 

She puts the drain in her cute purple bag which goes with her everywhere!  

It holds her sanitizer, g-tube care supplies, meds, thermometer, etc.  All the essentials we need are with her everywhere we go.  

Surgery 1: Biopsy of liver

Surgery 2:  Place port and G-tube

Surgery 3: Chest tube to drain fluid out of lungs

Surgery 4:  Embolization to place chemo directly where it was needed in the liver.

Surgery 5: HUGE Major Surgery!  80% of Liver removed, Diaphragm on right side, 8 spots of lungs.
River used to get major headaches all the time since Kindergarten.  She was only able to draw or color or read for about 10 minutes before headaches hit.  Since her surgery, she has not had a headache!

Surgery 6:  New Port - Placed Higher than last time - The 1st port was low - placed for modesty for girls.  We loved the placement.  It is that surgeon's trademark to place them low like that - very unusual and we appreciated it so much.  You usually never know how good you have it until it is gone.  Now that it is higher we miss the 1st one, but are SO grateful to have a port!  Much much better than IVs!

Surgery #7:
Remove large pocket of fluid from abdomen.  It was distending her belly there was so much buildup.  It was not abnormal after such a large liver surgery.

River has the best attitude through all of this:
It doesn't hurt too bad!  (compared to before pretty minor!)
Before surgery I need to scrub her down with sanitizing wipes - it makes you cold and sticky!  And then she gets to put on lovely hospital jammies that tie in the back.  She says

"At least I don't have to do this every day!"

The power of perspective!  She was getting up and going to the bathroom after only a few hours in recovery.  She was fully appreciating it, remembering how hard it was to just sit up after her major surgery.  5 months later the pain of those days is distant enough to not be so raw.  I am finally able to write about it here.

Being awake was to be in pain.  Intense pain.  To deliver the pain meds necessary to make her comfortable would have been too much for the body and she would have stopped breathing.
Just to reposition to prevent bedsores was agony.  To change the sheets and give her a sponge bath Colt stepped in the hall for privacy.  It tore out my heart to have to inflict such pain - but also the greatest honor to be "Mommy" and have the privilege to help my daughter in such a crucial moment.  Colt said that he heard someone hollering and felt bad for that child.  Then he realized that that child was River.  :(

The longer the gut is asleep for surgery, the longer it takes to wake it up and start things flowing.  They clean out the intestines with a powerful laxitive before surgery.  Gas buildup and starting to move again was intensely painful...suppositories, enemas...
After they removed the catheter River was pretty anxious about making it to the potty as she hadn't yet been able to swing her feet over the side of the bed.  But when nature called they brought in a bedside comode.  She took one look at that and decided that it was worth any cost to have a private bathroom and trekked across the room to the potty.  One tough cookie!

River was hooked up to 17 different lines:
*IV monitoring blood pressure
*oxymyter to measure oxygen in blood
*oxygen tube to deliver oxygen to nose
*4 electrodes to monitor heart
*4 IV lines running to her 2 central lines in her neck:
One for her pain meds that she got to push a button to have meds when needed,
TPN:  IV nutrition
Fluids
*2 chest tubes draining her lungs
*2 JP drains to drain abdomen.
*G tube drain - to pump things out of her tummy,
Replaced by G tube feeding in later on
*Catheter
It was quite the effort to get out of bed to the bathroom or to change positions and get to the chair or back into bed.  We had to be aware of every line.  Either unhook it or take it with us carefully.

We started slow after several days to let her body get used to food again.
Ice Chips
Water
Slushee
Pink Lemonade
Formula - G tube feeds
Then the day came where the surgeon said that River needed to start eating solid foods.
In Extreme pain and nausea you don't feel like eating very much.  To wean off the pain meds also increased the nausea.

1 Corinthians 3:2

• New Testament

I have fed you with milk, and not with meat: for hitherto ye were not able to bear it, neither yet now are ye able.

Then there came a day when Surgeon Myers said that today she needed to eat.  Start on fruit.
The cafeteria in Primary's is AMAZING!  We had a fruit platter sent up:  an assortment - we found that when food was infront of her she would sometimes surprise us all and sample some.

One grape

I did it!  I ate!

One Grape

And it was enough

It reminded me that God's grace is sufficient!

Moroni 10:32

• Book of Mormon

Yea, come unto Christ, and be perfected in him, and deny yourselves of all ungodliness; 

and if ye shall deny yourselves of all ungodliness, and love God with all your might, 

mind and strength, then is his grace sufficient for you, that by his grace ye may be 

perfect in Christ; and if by the grace of God ye are perfect in Christ, ye can in nowise 

deny the power of God.

2 Corinthians 12:9

• New Testament

And he said unto me, My grace is sufficient for thee: for my strength is made perfect 

in weakness. Most gladly therefore will I rather glory in my infirmities, that the power 

of Christ may rest upon me. 

Visitors from home!

The pics remind me of memories - 

The lines are not so crisp and defined, but mellowed and sweet.  

Summer (oh, she reminds me often it's Kit!) and Silver

River made remarkable progress - She amazed everyone from Nurses to Doctors and Surgeons.  She would push herself a little more to do a little more each time she got up to practice on lungs a little more.  Slowly but surely we got rid of tubes one and a time.  

Crafts!

Lung Exercise Art.

She would use syringes (same as for her gtube) to drop watercolor on a page.   Then with a straw blow the paint around. 

River with Rabecca Myers - 

Special Surgeon!

Before Surgery #7

After Surgery - With handmade Necklace River made for her.

River was practicing with her wheelchair for when she is too weak for walking - she gets around pretty good!

Laughing so hard it hurts!

Daddy is a tease :)

Uno Attack!

One of our favorite songs:
Dream Big by Ryan Shupe
https://www.youtube.com/watch?v=q8okOgw-jn4

Ether 12:27
Book of Mormon
 And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.