Life: 365

I so much wanted this blog post to be meaningful
deep
life changing
powerful ......
Yet I don't have it in me.
I don't have the words.

I read blogs that cut straight to my heart.....eloquent, convicting.
I wish I was that writer...because I have so much to say.
I have been trying to say it for the 365 days Victoria's been home.
Look at my previous posts.
I have tried, but unless you can see into my heart you really can't know.

She has changed me

They ALL have changed me

Life is hard
And my biggest wish for you readers is that you could experience this hard life.
Not so you will say, "Wow....how do you do it!"
No, not that at all.
I want you to experience this hard life so that you can also be immeasurably changed and incredibly blessed.
So that you, too, can find the real meaning in life when you are called by God.
When you push down the fear and the excuses and you rely wholly on Him.

And then.
And then...

Hidden in the diaper changes and the therapies.
The hospitalizations and the worries.
The fears. The sleepless nights...
you find Joy and Peace.
Purpose.
That friends, is my prayer for you.

It was one year ago today that we walked out of the orphanage with Victoria.

But you know her story...I have told it.
What you don't know....what you can't know....is how very close she was to dying.  How can a child be 8 years old and only weigh 9 pounds...how?

Her skin was sallow
Her eyes were hollow
She barely moved
She had so much dark hair on her legs and arms and back (the bodies defense when extremely malnourished)
Maybe you are tired of hearing about it.
I'm sorry if you are.

I wish she was the only one.
I wish I could forget about the ones who still wait.
The ones who will die waiting.
I wish I could UNSEE.
I wish you COULD see.

Clarence:

Quinn: 

Elias: 

Carter: 

Kayson:

Jackson:

Lucas:

The reality is most of these children will not be adopted.
Most of them will die.
Share these children......speak up.

Pray
Adopt
Advocate
Donate
Support a foster family
Support an adopting family.

Life is challenging for adoptive and foster families.
Don't forget about us, though we smile and say it's ok.
It is easier to say we are fine...then to explain.
You can't adopt?
You can't foster?
Find a family in your community ...adopt that family!

Adoption of all kinds makes ALL the difference! 

Ch-Ch-Ch-Changes!

The changes...physical, cognitive, emotional....are incredible.

It take so little to change a life.....

We are so blessed.

Sophia

Joseph

Ella

Victoria 

Now that you've seen the changes family life, love, medical care and nourishment has made in my children, imagine the change that would happen if these lost little ones below are adopted.  They are waiting, sadly even languishing, without families.  Would you pray over their pictures when you read this? Would you share? Even consider opening your family to one of them? 

He has shown you, O man, what is good;

And what does the Lord require of you

But to do justly,

To love mercy,

And to walk humbly with your God?   Micah 6:8

Penn is 7 years old now and has spinal bifida. Look at his sweet cheeks!  http://reecesrainbow.org/53272/penn

Lonny is just a very little boy who needs a mommy!  Could it be you? http://reecesrainbow.org/112142/lonny

Vivian needs medical care and love before she loses her sweet smile. http://reecesrainbow.org/103317/vivian

Isabelle will age out too soon. She's eligible for a $10,000 grant! http://reecesrainbow.org/4400/isabelle-2-2

A Bittersweet Goodbye

I like to think it was FAITH.

But to be HONEST it was more a combination of ignorance and stubbornness.

Her medical report from the orphanage is daunting.

Failure to Thrive...Marasmus 

Trisomy 21

Cerebral Palsy 

Atrial Septal Defect

Ventricular Septal Defect

Microcephalic

Albumin-enzyme 

Malnutrition

Pseudobulbar Paralysis

Vitamin D Deficiency

Sophia

Almost four years ago she was a ten pound four year old.....with just enough energy to stay alive.

In her orphanage she was fed through an NG (nasal-gastric) tube.

So thankful for that tube....even though the calories given through the tube were barely sufficient for survival...the water given through that little tube was her life source.

Pseudo-bulbar paralysis/palsy

  "a medical condition characterized by the inability to control facial movements (such as chewing and speaking) and caused by a variety of neurological disorders."

We were told she could not/would never... suck, swallow, chew.

One month after we arrived home we had a g-tube placed.

"A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow."

That little device became our best friend......it allowed us to gradually teach Sophia to eat and drink, without the worry of her caloric intake. 

And so today we say goodbye to her g- tube. 

She has been eating and drinking independently.....Can she eat a burger and fries independently? Not yet.....but she certainly can spoon feed herself most anything as long as it is semi- puréed!

And she can drink from a straw like a champ, without a single hint of aspiration.

We did not know if this day would come. We are so blessed and thankful that it did.....however Sophia has value because she is a Child  of God. Our Daughter. Loved and Adored..

G-tube nutritional  or oral nutrition? 

Non-.Verbal or verbal?

Wheelchair or walking?

Neither here nor there.....she is who she is, and we will do our best to help her become her best self, whatever that looks like.

So with thankful hearts we say a bittersweet goodbye to this g-tube. 

Post tube removal oatmeal!

Developmental Profile? Pfffft!

For just a moment...for just a breath.....the sadness was there.

Even the most basic question had to be answered “NO":

(When your child is held in a sitting position, does she ever try to reach for something with her hands?)

The more “advanced"questions:

(Does your child consider what friends want to do when planning activities with friends?)

She is so very far "behind" in all categories. 

Physical

Adaptive

Social-Emotional

Cognitive 

Communication

It's true.

It's obvious.

It cannot be denied.

But then....she makes eye contact with me.

She holds her head up independently.....with only support partway up her torso. 

She listens closely when her brother who is on vacation calls and asks to talk to his “Boo".

She absolutely ROCKS her new glasses!

Victoria has had so many challenges.

The first eight years of her life were a struggle just to survive another day.

She had no life in her body..but more disturbing...she had no life in her eyes.

Since we have adopted her she has had a variety of health issues.

(We still have no definitive answers …particularly to the source of the last infection that kept her in the hospital for six days.)

The difference?….She has been loved through each and every challenge.

She has had family with her every moment.

So, though she is still off the charts on the DP-3, the progress she has made is astounding.

I do know with utmost certainty that a Developmental Profile test

will not ever come close to accurately assessing how hard this girl works for every gain that she makes, nor will it ever take into account the things she has experienced those things that would make you and I curl up and die. 

She is a fighter.

She is an overcomer.

And her journey has just begun.

Sweet News

Update
We are home.
Victoria is so very happy!  She is squealing and smiling...both because she feels better but also because she knows her family and she knows she is home.

It is very sad to watch her become more and more withdrawn the longer she is in the hospital.  The nurses are amazing. The doctors are thorough, professional and kind, but it is a very difficult place to be. 

Little Miss is a super challenging "stick" so we lost three IV's in seven days and we had to do countless blood draws. We were admitted because of high fever. Since Victoria became septic a few months ago we do not mess with high fevers.
Tests showed she had a pretty severe infection...somewhere.
That became the conundrum!

Chest X Ray, echocardiogram, kidney, liver, spleen and bladder ultrasounds, stool samples, urine cultures, maybe her broken femur (healed) had became infected.....radioactive bone scams showed nothing (we scanned her whole body to rule out bone infection anywhere).

So...we are home.
No answers.
Enjoying family and praying for no recurrence.

We have a couple of big surgeries (cleft palate and hips) upcoming....but for now we want Victoria to just get to be a kid.  So we are taking a couple months off...and trying to stay out of the hospital.

                                  

In and Out and In Again...

It's been a long few weeks since I posted.  My friend and advocate Frankie visited from out of state.  It was so fun to be able to spend a little time together and she LOVED hanging out with her Bulgarian babies. 

Victoria has healed from her broken femur and the spica cast was removed. Look how much she has grown and changed!  

Ella had surgery to remove her tonsils and adenoids and then, a couple of days later, she had to be readmitted. She's doing better now.

A few days after we were released, Victoria began having unexplained fever and fussiness, so we are now admitted with her.  

Same hospital, same view, different child, same loving Savior watching over us all. 

Please be praying that they can find the cause of her fever and she heals.

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!