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! 

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!