Victorious Forgiveness

This girl.
This Victorious daughter.
How we have learned from her.....how we continue to be inspired.
Her JOY
Her STRENGTH.
Her FORGIVING nature.
Working SO hard in Occupational Therapy......and then a broken femur.......
Intense Pain.....misdiagnosed as hip strain causing her 24 hrs being treated with only ibuprofen.
More X rays....more waiting.....five attempted IV placements, and finally on number six we were able to get some morphine into her little body.
Overnight in the hospital in a temporary splint while trying to get her pain under control. We were behind the eight ball for sure and it felt like a losing battle.
Four days after the break a two hour trip to Shriners.
We were told in a typical child a pin would be placed.
When a child has been severely malnourished for eight years and given no opportunity to bear weight the bones are severely compromised.
No pin.
Major casting under anesthesia.
4-8 weeks casted.
Forward progress halted.
My weaker self can easily get caught in the "what it's" the frustration, the blame.
And again, she teaches us....
Victoria chooses joy.
Victoria chooses strength.
Victoria chooses forgiveness.

A little help from brother.

She be FIERCE!

She is so LOVED! 

THANK YOU!

......and we THANK YOU.

When it is still.

When it is quiet.

When the chaos calms.

When we look around.

When we see with our hearts.

When we breath deeply.

......We thank you.

It seems as though we have not really had a deep breath since our adoptions....

of Sophia

Then Joseph

And Ella

..and now we have been home for four months with Victoria.

We have had a steep learning curve.

Unexpected diagnosis.

Moebius Syndrome

Wolf-Hirschhorn Syndrome

Institutional Autism.

Diagnosis were familiar with but with the added "bonus" of little medical care and little to no early childhood stimulation....

All of a sudden these familiar diagnosis/medical issues become a whole new ball game:

Down Syndrome

Failure to Thrive

Cleft Palate 

ASD

Tetralogy of Fallot

Scoliosis

Limb Difference.

And through it all. When we have a chance to breath.

We Thank You.

Adoption is a long, difficult journey.

The expense of adoption is overwhelming.

Parenting all children is a constant test of wisdom, patience and faith.

Parenting children from hard places takes that to a whole new level.

And through it all. When the chaos calms.

We Thank you.

Every prayer.

Every unexpected gift.

Every donation.

Every kind word.

Every smile.

Every time you give Grace when we have failed.

Every moment you rejoice with us in the small victories.

We THANK YOU.

Do you know?

Do you understand?

We truly could not have done this without you.

YOU!!

Please know that.

Many of you we have never met, will never know...yet you have literally changed our lives.

Look at these photos....and take a moment of PRIDE, because without YOU there would be no "THEM"

A Treasure Discovered

I just can't get enough of Little Miss's adorableness.  

I thought I'd share some with you, too.

Who wouldn't love to have a treasure like this!  

I mean, REALLY! Who can resist that face? 

And this....she's got it all!  Looks, personality and charm!  

If you feel a call to add a child to your family, pray for leading, then go visit Reece's Rainbow. There are hundreds of children longing for a family to come and cherish them!  Many are hidden away, like Victoria was, drawing closer to death every day from neglect. Many others are doing ok, but an orphanage is never a replacement for a loving family. 

James 1:27

Pure and undefiled religion in the sight of our God and Father is this: to visit orphans and widows in their distress, and to keep oneself unstained by the world.

DX: FEARFULLY AND WONDERFULLY MADE!

"When You don’t move the mountains I’m needing You to move

When You don’t part the waters I wish I could walk through

When You don’t give the answers as I cry out to You

I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings 

There’s not a day ahead You have not seen

So, in all things be my life and breath

I want what You want Lord and nothing less"

We have been waiting for the results of genetic testing for our sweet Victoria . 

Wolf-Hirschhorn syndrome is an extremely rare chromosomal disorder caused by a partial deletion (monosomy) of the short arm ("p") of chromosome 4. Major symptoms may include extremely wide-set eyes (ocular hypertelorism) with a broad or beaked nose, a small head (microcephaly), low-set malformed ears, mental and growth deficiency, heart (cardiac) defects, and seizures. Because the amount of genetic material deleted varies, the symptoms of this syndrome vary from case to case.

We received this diagnosis with utter faith and trust.....no tears or sadness. Such PEACE.

How?

Seven days before we received the results of her genetic testing we almost lost our daughter. She was life flighted from our local hospital to the nearest children's hospital. She had very aggressive fast moving sepsis. Her body was shutting down.

We don't know why God saved her. 

We don't know where our faith would be if He had chosen to take her. We like to think it would not waiver.....but truthfully we don't know.

We do know that HIS timing is perfect. Almost losing a child put life back into perspective. Wolf-Hirschhorn Syndrome?? BRING IT ON!.....our daughter is ALIVE!

LifeFlight to Wagon Ride

From LifeFlight helicopter transport to a wagon ride in three short days. This girl is gonna kick this! She is so much better. Thank you for your prayers.

So what happened? "Septic shock is a serious medical condition that occurs when sepsis, which is organ injury or damage in response to infection, leads to dangerously low blood pressure and abnormalities in cellular metabolism. It can cause multiple organ dysfunction syndrome and death. Its most common victims are children, immunocompromised individuals, and the elderly, as their immune systems cannot deal with infection as effectively as those of healthy adults." 

Should all continue to go well and tests show good results, we expect to be discharged soon.  Praise the Lord on high for His mercy and grace!  

Life Flighted

Please lift Victoria up in prayer right now, as soon as you see this.  We are in the hospital.  We need the medications to begin working miraculously quickly. More as soon as I can. 

ETA: being life flighted to major Children's hospital. Please keep praying. 

"Just a Cold"

She has been sick…..coughing, choking and crying. "Just a cold"......but with her little body and her ng tube and her cleft palate "Just a cold" can become a big deal.

I wonder?

How many times in eight years has she had "Just a cold"?

How many nights did she cry and cough and choke in her crib.

How many times did her little body burn with fever?

Never again. 

This I promise you, Victoria:

A mama to hold you....and take your temperature 

(ok...obsessively )...

A daddy to call the doctor first thing in the morning.

Brothers and sisters to pray for you and ask mama how you are doing.

Simple things.

Things every child deserves.

Things we take for granted.

Things that so many waiting children will never experience.

It still seems as though there are more questions than answers. When I feel as though the answers are slow in coming I remind myself that truly what we set out to "accomplish" with Victoria has already taken place. She is loved and wanted....

"I'll love you forever , I'll like you for always, for now and forever my baby you'll be."

And so we continue to seek answers to her "complexities" 

We do know that she has level two kidney disease.....her right kidney is scarred and her left kidney has severe reflux 

(level 4 out of 5)...we have an "urgent" referral to a pediatric urologist to finalize a game plan.

We have surgery scheduled for Tuesday, March 8th to place a gastronomy tube....she will be our fourth child who has had a 

g-tube so we are very comfortable with it...however the surgery itself and Miss Tiny Britches going under anesthesia concerns me. We have been able to avoid anesthesia till now.  We were able to get an excellent read in a brain MRI without anesthesia.....thanks to Mama going in the "machine" with her.  We were also able to accomplish the renal testing without anesthesia.  I am thankful that she has had a couple months to gain strength before this upcoming procedure.

Our appointment with the Neurodevelopment Clinic confirmed that she Does NOT have "spastic quadric paresis to severe degree"..... She DOES have severe muscle atrophy and that atrophy has "locked " her legs so they will not fully extend. We will begin PT to address this.

We received approval for genetic testing.....really anxious to get the results!!

We have a referral to Craniofacial which includes dentistry...her little teeth are SO decayed.....and eventually a repair to her cleft palate and maybe a revision of the repaired lip...it was done poorly.

We will begin feeding clinic after her g-tube surgery. 

Neurodevelopmental predicts she will not get much taller...therefore though we want her to gain weight we have to be cautious to not let her weight gain outpace her ability to move her body through space.....does that make sense?   We have hopes that she will sit, crawl, walk....so we want her to be gaining muscle tone and strength and not let her body get too heavy before the muscles are ready.

She is now 13 pounds 6 oz......that is a four pound weight gain....

It is slow and steady and it looks SO good on her.

Victoria is a happy, happy child. Smiles come more easily now. We hear her sweet giggles. How this child can live in JOY I do not know....but I certainly strive to be more like her.

We continue to  marvel as our little flower begins to blossom.  Praise God!

Ella (9) Victoria (8) Sophia (7)..... Our Bulgarian Beauties!

Joseph (10) Ella (9) Victoria (8) Sophia (7)..... Plus our Bulgarian Prince!

Please pray for those children that still wait.....and if you ever want to know more about foster care, domestic adoption or international adoption please please contact me!

Thank you for caring about our sweet Victoria.

Simply Complex

COMPLEX; adjective, "So complicated or intricate as to be hard to understand or deal with"

But, wait!

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

Yes......our sweet Victoria is "complex". .....although the next medical person who tells me this should think about self protection.

But wait!

Matthew 6:3

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

The issue seems to be determining if her complexity is a result of eight years of neglect, eight years of starvation, a syndrome, a diagnosis, ......or all of the above.

But, wait!

We do know.

* Victoria had GROWN.... from 9#6oz to 12# 2oz.

* She loves to be held, and her favorite position is on mama’s chest.

* Little Miss is finding her voice. It is not often....and it is more of a squeal...but it is purposeful communication.

* Cerebral Palsy is an unlikely diagnosis ......MRI will confirm.

*Victoria has some pretty severe issues with her hips....life in a crib or pre-existing condition??....don't know

* Her kidney has either scar tissue or congenital malformation...more testing scheduled with Nephrology. In the meantime prophylactic antibiotics to avoid recurrent UTI's.

* Heart......ultrasound showed NO defects.....despite her medical paperwork from the orphanage stating otherwise.

* Seizures?  Again...MRI will tell us more but though she seems to have a fairly severe seizure history, we have not seen any and the neurologist is not concerned.

Optimistic and complex are not mutually exclusive.....particularly with the knowledge that God seems to revel in the complex....or maybe it is just we who make the simple complex?!

I do know that our complex girl is relatively healthy, growing, happy and loved,

More than we could hope for.....

Two plus hour drive to Shriners......sleepy head traveler.

Special bond....

Still being fed every four hours.....

Such a music girl....maybe someday she will play?

9 month onesies are still HuGe!

Mama likes bows.

Count Your Many Blessings

"Adoption experts and experienced parents always advise families to “cocoon” when coming home with adopted children — which basically means keeping your child’s world very small, predictable, and simple. There’s so much change for them to process, so much stimulation..…the less new stuff thrown at them, the better. And this includes people: A child’s ability to attach to new parents is much more easily accomplished when there’s no one else around to bond with." ~Zoe Saint-Paul

Sorry Sweet Victoria, Mom and Dad have failed miserably on all counts! 

Three different hospitalizations in three weeks.
Two doctors visits.
Three clinic visits.
Multiple multiple blood draws.
Inter muscular injections.
IV's. 
Hotels, airports, loooong flights...oh MY!


But you know what?
She KNOWS home....I can see it in her eyes. 
I can see it in the way her body relaxes. 
I can see it in the reduction of her "stimming"
.....isn't that miraculous?
This girl....this girl waited eight years for a family and by golly she is not going to waste a minute of that!


This last hospital visit was unexpected.  She had a fever that was difficult to break, and she was not "herself". That in itself was a hard call because we don't know her really well yet, but sometimes you just have to listen to mama-gut.
We brought her to the doctor and he felt it was best to hospitalize her.
We are not 100% sure yet but it looks as though she has some kidney issues and kidney scarring which may be caused by multiple untreated UTI 's or possibly a congenital issue.
She will be treated with low dose antibiotics and we follow up with nephrology at our children's hospital.
If all shows normal, then we continue to search for the cause of fevers and elevated white blood cell counts.

In addition to nephrology the next few weeks hold appointments for Neurology, as well Neurodevelopment and Shriners (yay...love Shriners)...and of course always the overriding goal of weight gain and feeding clinic.
 
We have yet to meet a doctor or nurse whose jaw does not drop when they learn our girl is eight...

Guess what though?  Our girl has a belly button now.  Ever so tiny...an indentation in her tummy! That means she has a little bit of fat.....enough to allow that little tummy to show a touch of that precious button. Praising God!



We are so blessed by this girl. Every single thing about her!

Amazing Grace. Unfailing Love.

Three weeks. 

HOME three weeks. 

How amazing to use that word. HOME!

It has been beautiful....heartbreakingly beautiful.

How can a girl of eight (January 15) be eleven pounds?  

But then.....hallelujah ...she has gained from 9.8 # on pickup.

How very sad that she turns her head away from us....as far as she can possibly turn it to avoid interaction...UNTIL!!!.....she hears music. It is then that her eyes light up and she seeks that interaction. How amazing that she let us in on that little secret....thank you for revealing that to us Lord!

How my heart breaks when she whimpers each time we reach to pick her up. No child should EXPECT to be handled roughly....ever. Yet how my heart overflows when she melts into me, and feels safe enough to fall asleep on my chest.

So much yet to discover.

Cardiology. Neurology. Orthopedic. Feeding. Genetics. Cranio-facial.

Blessed that our other children love their sis.....and seem to understand the time these things take.

Can she walk? Talk? Roll over? Eat?......nope.

Is she a "joyous blessing"? 

Is Victoria "a gift from the LORD"?

No doubt.

Are some days and nights tough?  Of course, many!

"But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

Amazing Grace.

Unfailing Love. 

Shown to us every moment by Jesus.....

So thankful His mercies are new every morning.

Thank you for your support.

Thank you for believing in us. 

Thank you for helping us bring this little miracle into our lives.