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.