“Eye has not seen, nor ear heard, nor have entered into the heart of man the things which God has prepared for those who love Him.” 1 Corinthians 2:9

Wednesday, March 2, 2016

"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.

10 comments:

  1. I'm so glad for these updates! Keep fighting, sweet girl!

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    1. Come home so you can meet her please!

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  2. I'm very impressed that your medical team understands the importance of a regulated, slow weight-gain. So many children end up with severe scoliosis because their bones aren't strong enough to support a rapid weight gain.

    I'm so sorry to hear about the kidney disease, however, I have a child with kidney issues, among others, and kidneys are one of the easiest organs to transplant these days, if it ever comes to that.

    You're doing a GREAT job!

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    1. Thank you......appreciate your input!

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  3. I am glad that she is surviving "the cold"... And I do appreciate the medical updates. She looks so cute in her little seat!

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    1. Thanks Mama V. I truly appreciate your support and your comments. It means a lot!

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  4. Randal Jenkins OHSU Nephrology. He's at the outpatient clinic in Bethany (Portland) on Wed. Easier to see him there:)503-494-7327Good luck.

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  5. How are things going? Did the g-tube surgery go as planned or was to cold too much to risk anesthetic with?

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    1. G tube surgery went great...recovery was difficult for a few days but she is now tolerating normal feeds......
      Unfortunately we had a bump in the road earlier this week.....our latest posts talk about that. Victoria is a fighter though...an God is sovereign!

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