Sunday, April 20, 2014

First Easter Fun

We are getting ready for Cephas to have surgery in the morning so I wanted to take the time to put up some sweet photos from yesterday.  It was a beautiful day in Arkansas.  Not too hot and not too cold.  Perfect breeze.  As Cephas said, it was the perfect day.

We don't do baskets, but we love the whole egg hunt experience and everyone participated.

Cephas was SPEEDY!

Lucia said this was a special day she would never forget.  

Grace was a FIERCE competitor!

Liam raised the bar for the egg hider requiring some tree climbing!

Rainan acted as encourager and helped Lucia and Jubilee score a few finds.

Cephas retelling just how amazing the whole hunt went and his score of nine eggs!

Holden caught off guard while explaining the most current airline industry news with Grandma.  This was his first year not participating in the find part of the hunt.  He has grown up so fast!

Rainan's face made me laugh!  

    Just quick thought to share....something I noticed and want to remember to take note of.  We were at the store and I had Rainan and Liam with me to pick up some fun festive things for Easter.  It's difficult to spend money on trivial things at Easter but we do want the kids to have fun memories.  Once upon a time we did big baskets with treats and candies but we have moved away towards activities and to choosing one candy treat per child. 

    At the store,  I found myself observing Rainan and Liam looking at each of the chocolate bunnies and candy options and discussing what each child at home might like.  They picked out their own too.  Something was missing that I used to remember vividly.  They took pleasure in thinking of what their sibling would enjoy.  They contemplated what they would like to choose for themselves without begging me for everything.  I hadn't even had "the talk" with them.  

   Right there in the store, I felt myself getting teary eyed.  We made our purchases and their hearts were filled.  They didn't feel slighted!  I know this might not seem like a big deal but for me it was huge.  We have turned a corner from feeling entitled, to feeling thankful.  They know that Jesus rose from the dead.  If you ask them about Easter, they can tell you what that means!  

    No condemnation on baskets and candies and bunny's.  We love fun stuff too.  But we have wanted to be mindful that we cannot press into faith while also indulging.  The other day reminded me that we can have both deep love, appreciate what we are given and feel satisfied.  

    They won't remember a specific candy on Easter, but they will remember feeling the "perfect day." the morning....Cephas has his legs amputated at the knees.  We head to sleep now, knowing 24 hours from now will be a new journey started.  Thank you to those who have continued to keep him in your prayers.  He's such a little love.  I cannot imagine life without this guy.  So very blessed!

Thursday, April 3, 2014

Jubilee's Breakthrough

Last fall on our walk

I haven't shared a lot of Jubilee stories since she has been home the last two and a half years.  To be quite honest, she has had lots of challenges and I didn't want the kinds of things I would be reporting to be simply negative.  We weren't seeing lots of breakthroughs.  There were many long, long days.

But today, I am sharing.  I'm sharing because today has been combined with several days the last month or two of big breakthroughs and todays was pinnacle for her.  We celebrate it with her as it does bring relief to our hearts too but nothing like seeing her experience THIS success.  

For those who don't know, Jubi (pronounced JU-Bee) has spina bifida and hydrocephaly (with a shunt).  We knew she had much difficulty maneuvering her body and seemed very stiff and rigid in her upper body but it wasn't until Cephas joined our family that we could see such a marked difference in their abilities to use their upper bodies.

Our sweet girl (she really is!) can sound a bit more like a truck driver when she is frustrated and it seemed anything asked of her that was beyond her comfort zone (that means, effort was required) would turn into screaming fits, name calling and even throwing her head onto the tile floor.  I knew she was able to do so much more, but the inner strength and motivation to do it was needing to be found first.  That's not something that can easily be bribed or talked into with this one.

I knew I had to have her heart, but I also knew that she was smart enough to stay weak and unwilling.   So these couple of years have involved lots of tears.  LOTS of tears.  Lots of prayers.  Lots of do overs.  (That last one times 100).

"Jubilee, I want you to know what you CAN do.  I want you to see what I SEE!  And the only way that will happen is if I let YOU do it."  Those were often taken as fighting words and as rejecting words.  Those words had to be wrapped in all kinds of other words but they had to be expressed and they needed to be enforced with love.  

Before Christmas one day, she was particularly angry and had used bad words.  She wanted to put herself to bed but she was in her walker.  I told her if she wanted that she could do it herself.  By golly, having never done it before she figured a way to get herself into her room and turned around and up into her bed getting her braces off.  And- she did it quickly!  This was the beginning to a whole new way of how I began to approach most everything with her.

When she was given a paper to do her handwriting, she would write backwards.  I learned to take her finished paper and without reacting, just say, "Oops, time to redo."  She thought certainly I would become exhausted at wasted paper.  But she didn't realize I was aware that being able to write backwards took a lot of smarts.   After the tenth sheet, her paper was turned into me, every letter forward facing.  I let her pick out her sticker and hang it up.  I let it be something SHE was proud of and not about getting my approval.  I wanted her to know I was pleased but I really want her to see her possibilities when she doesn't give up. 

Bit by bit- task after task, screams became less intense, not as long and soon the efforts she was putting into her tantrums she began to put into working her body.  Her challenges are greater than Cephas.  He has great fluidity in his upper body.  She is much stiffer and it takes her twice the effort to do what he does.  She has one leg that doesn't bend and is hyper extended which often gets in the way too.  She's got reason to be frustrated.

Then- come February she decided to shock us.  She knew Cephas was doing his own catheter and I found her in our bathroom doing her own!  HUGE triumph!  Monumental.... I knew then that this sassy pants was more capable than any of us imagined.  And her patience had been growing....along with her self confidence and trust.

But the final HOORAY came today.  She has had a love/hate relationship with doors.  Her last hurdle was to figure out how to go in and out the door.  She had been watching Cephas do it effortlessly for months.  She was still caving into her scream fits and this morning she let it out...for the last time at that door.  She pulled and prodded and grit her teeth.  She winced and glared and reset her focus some more.  I LET HER GO FOR IT.  She was regulated.  She knew what she was after.  I was watching her move into productive determination. And this is what she learned to do today:

Jubilee's Success

My children are each unique with their own trials and they test us.  They cause us to have to press in to love,  patience and endurance.  But then there are these days, beautiful breakthrough days, that we get to celebrate with them if we will stay on the journey and see them through.  It's tough to be both the soft place while being the one who presses them out of their comfort zone.  But that is what God does with us too.  He doesn't want us to get so cozy that we don't grow, and move into all He has for us.  He doesn't want us to be satisfied with lukewarm faith.  He sees in us all the things we don't see in ourselves, and when we pray, He is faithful to press us into growing up into Him where we are most safe.  It feels vulnerable to grow.  Success is found in our mistakes too.

I think Jubi is beginning to have these glimpses of truth building up in her, and as her mommy, I am so encouraged.  Thank you God for walking these days steadfast with me as her mommy.  They are good, meant for good and goodness will be the fruit from the trials.



Tuesday, March 25, 2014

Sonya's Hope

     When Randy and I traveled to Ukraine last year, we were blessed with a surprise in new friendship with Christina Rudenko. She and her family are a very dear part of Eli Project our ministry partner in Brovary Ukraine. Christina's daughter Sonya is a special little girl who has been living with terrible hip pain for several years and is in need of surgery that cannot be done in Ukraine. After a lot of travel and visits with doctors, her hope is a surgery that costs $48,000 euro . They have been told by a German foundation that they will consider a possibility of providing a partial amount, but only after at least 50% has been collected.

      As the mom of five with special needs and knowing the challenges, I cannot imagine the added efforts of visiting doctor after doctor trying to find someone who will even bring help. I am asking you to consider reading about this precious little girl and her plight.

      I praise God that she was born to these parents who have trusted faithfully in the midst of much. Thank God Sonya was not orphaned! The Rudenko's represent HOPE to many in Ukraine.  Can we help them?  Can we blow their sock's off with Jesus love?  Can't wait to see what God will do!
Click on this link to read ALL about sweet Sonya and to see the documentation on costs. And by all means SHARE on FB if you can!! 


Lucia and Cephas story by KSDK's Mike Bush

Lucia and Cephas video -KSDK tv January 12, 2014

Cephas's Awesome Video's

 Next week we travel to St. Louis for his pre-op appointment with anesthesiology and his last visit with the doctor before the big surgery.  He understands his legs are coming off.  I'm not sure he can fully grasp what that will be like but I don't think any of us could completely prepare for a double amputation.

I decided to take some video for our own recording and memories and wanted to share with you all too.

Cephas crawling and going upstairs

Cephas going downstairs

It's sort of hard not to notice how sweet he is!  God has been so good to build up trust in his little heart and to give him such a joy for life. 

Lucia speaks!

 So many of you have asked how Lucia is doing so I thought I would take a little video and have her tell you herself!

Lucia speaking about how she is doing

If you couldn't make out what she said, she was letting you know she is doing great and working hard to sit up in her wheelchair for longer periods of time each day.  :)

She is very ready to be out of her brace.  The days are long in the brace.  She is keeping a good attitude as you can see but I know she longs to move on to other things.

Just some tidbits of information for those who might be curious:

- Typically when children or adults undergo a surgery of this magnitude they can begin a more rigorous schedule with therapy.  Because of malnourishment and being non-weight bearing for many years, her bones are very soft.  Her therapists are only able to work on helping her stretch her neck, move her arms and stretch her feet.  They want to be sure that her bones attach well to the hardware.
Lucia with her physical therapist, Tonya (WE LOVE HER!)
-She is in her brace except for tiny breaks from time to time.  Even when she bathes she is in a special brace made for bathing.  This means that snuggling together is pretty impossible.  Her greatest yearning right now is to snuggle with mom on the couch.  That's top priority when she becomes brace free!

-Lucia cannot come higher than a 30 degree angle until her brace comes off May 10th.  She has some fairly grandiose ideas of what that day holds.  While we are excited for all the future holds for her and have great expectations, we know May 10th begins a new journey of learning to sit up straight and holding her head up for extended periods of time.  Pray for peace and grace as she waits.

- She is scheduled for an appointment with orthopedics July 3rd to address her hips.  They are out of socket and on one side has no socket.  Pray we have wisdom in making decisions on how to help her be able to sit straight and onto her hips comfortably.

-Lucia has dreams to walk.  It's her hope to stand up.  The doctors don't think that is likely but haven't really told her that.  We know our God is a God of miracles - nothing is impossible with him.  Pray we are ever strengthened in faith and that Lucia will trust God, seeing him as good in everyway no matter what the future holds.

-We are so eager for beautiful weather outside.  Last week we had an extra nice day and she spent most of the afternoon on the covered front porch.  I thought I heard her so I went to the window to listen and she was singing!  She spent a good deal of time belting her heart out.  These are the simple pleasures that bring such joy to her and those who watch her.  

Thank you so much for praying for her! 

Wednesday, February 26, 2014

Lucia and Cephas Surgery Updates

  I promised an update to so many of you so long ago......

It seems my moments keep slipping by me.  So before I close my eyes for the night I wanted to check in here and thank all of you who pray for our family and who love us so purely!  Truly, I feel so grateful for the encouragement many have poured out over Lucia since the beginning of the year.

Lucia......sweet, sweet Lucia.

She is hanging in as best as she can.  She had lost weight since surgery and our ride home from the hospital - 6 hours - from St. Louis was tremendously challenging.  She vomited most of the way and we ended up taking her back into ER in the middle of the night to get her pain level under control to stop her. 
Lucia with Dr. Luhmann...the doctor who did her back fusion surgery
After two very intensive weeks, she finally began to smile again.  Oh how I had missed her smile.  She has several weeks to go yet still in her body brace.  The official date we can toss it out is May 10th.  She just had her check up on February 21st and the doctor says everything is going well. 
With Dr. Tam Williams - her pulmonologist (I LOVE HER!)
She will return to the hospital for her next check in July at which time she will meet with orthopedics about her hips.  Her greatest pain isn't in her back right now, it's actually her hips.  She has bone on bone rubbing and finding her right position is sometimes difficult.  She has some very big goals.  She told her dad at bedtime the other night that she plans on doing gymnastics!  Until then, we are anxious to see her sitting upright.  She can't come higher than 30 degrees angle and she can't tolerate much stretching.  Because her bones are so soft the doctor has ordered she be still to allow her bones to attach to the hardware well.

Cephas also had a big appointment on the 21st with orthopedics and he will be having both of his legs amputated at the knee on April 21st!  We are all excited about this....him too.  His legs have just been in the way of all he really wants to do.  Both legs, but the right leg in particular is so severely deformed with his foot completely rotated, his heel facing up and his shins curved from breaks and malnutrition. 

He is making HUGE strides!  He now does his own toileting and catheter.  He goes up the stairs and uses that bathroom to give HIMSELF baths....climbing in and out of the bathtub.  In order to come down the stairs he has to sit like a V with his feet up by his face and he slides bottom first coming down.  It's slightly terrifying as mom to watch but he really does handle himself well.  I'm not sure its the best thing for his hips but then again I dont know if he can do too much more damage there either.

So the big question everyone wants to know is if Cephas is going to walk with prosthetics.  We don't know.  His spina bifida is at the L2 level.  He has some quad muscles that work in his thighs but both of his hips are dislocated.  There isn't really a way to fix that at this point.  He has no feeling from his bottom on down and no glut muscles.  With all of that said, the doctor made it clear that about the time he tells someone they can't do something, they prove him wrong. 

He will start off with learning to get around and see what he does on his own on his stumps.  After that we will shoot for getting him up. He is so highly motivated!!  So yes we are believing with him for walking and we ask that you would join us in believing for his miracle too.  He knows he won't feel anything and he remembers his spine surgery this last September and feels good about that too.  We are told he will be in the hospital no more than three days and recovery is about 1 to 2 weeks so in the scheme of things it seems really quite short.  It will be all of the physical therapy and work afterwards that will be needed for him to reach his full potential.

Thank you again for praying and I apologize for not updating sooner.