Wednesday, July 18, 2012

International Adoption Clinic analysis.

Dr. Bledsoe from U of W called us at 12:30.  The first thing we were struck by was her comments right away how she felt we were an amazing family. We weren't expecting that from a physician to a family with 7 young children, adopting 2 more.  I assured her we were as ordinary as they get.

She told us she viewed Taizi's video several times, his file and all the photos.

She then softened her voice and said "I'm very very concerned about this little boy. Very concerned."

So she went in detail to talk about what she sees.  Of course she has not examined him, no scans and no blood work.

He is severely malnourished. She pointed out how he started life well. He had normal height, birth weight and head circumference.  She said since then...his head is the only part that kept growing properly.  At 3 years old his weight is that of an average 7 month old and his height of an average 15 month old (he is a few inches shorter than 16m Izrael).  She said his plateau in growth is of great concern.

Ears.  She said your ears line up with the crease in the corner of your eye. His are way lower.  They are also externally deformed.  She reminded us (we knew from Azlan's journey) that ears are formed the same time as kidneys and heart in utero. Therefore they often tell a bigger story. She referred to his 'heart murmur' on his file. She is quite concerned he has a serious heart condition.  Which would in her mind...explain the severe 'malnourished' appearance.  She said he definitely is malnourished but she is wondering if there is more behind that than just what it appears to be. Her concern: serious heart or kidney disease.


She does believe there is some genetic syndrome behind everything we see...her reason for this is:
-"profound growth deficiency"
-"unusual ear shape and placement on the head"
-"heart murmur"
-combined with cleft lip and palate

She does not believe he has hydrocephalus. She said we would see overall head size increase.  She does see the large forehead which she said could be a number of things.

Friends of ours suggested CP she does not see signs of that either.

Her voice went the softest when she said this:
"I don't know how to say this, it isn't easy to say...but I want to make sure I'm telling you what I would want to know if he were my child...there is a high high likelihood of 'mental retardation' (she expressed her displeasure of that word ... we share that). She said this is not a child merely in need of "love and good nutrition".  She did say she believes in our home and family he will grow and flourish...she also believes realistic expectations are important.

When we asked her about a letter she said "oh most definitely. This is a child where every day and therefore week matters. He needs to be home. He needs medical attention. He needs out of there, asap".

When she discussed his video she said it was 'difficult to watch' and she watched it many times.  She did note that his muscle tone was almost non existent and yet he had it as an infant as seen on his original file picture on my blog (on left hand side).  That concerned her that he's clearly regressing.  She said how she wished the director picked him up and cuddled him instead of snapping her fingers at him when he was on the horse.  Her final words regarding the video were "I think having seen that video that he couldn't even sit unassisted".  Thought that was interesting as Dean and I thought that when we originally saw it as well.

Overall...her prognosis is good. She believes he will flourish and grow and strengthen once at home. She does not believe he will ever be "developmentally 'normal'".  She believes he very likely has Rickets which is severe lack of Vitamin D and Calcium. She said the bones start deteriorating and therefore the muscles around them all lose mass. She thinks this explains the regression...he once held his head and now does not. She said this is very reverse-able.

The tests she wants when we come home are:
-screen for Rickets
-echocardiogram of heart
-ultrasound of kidneys
-urinalysis
-chromosomal analysis
-MRI of brain

We are told we will have the letter scanned to us tomorrow.

I called Dean after we hung up from our three way call together and he said he was wow'ed by the doctor's compassion, heart and way with words for such a difficult matter. He said he was thinking through the lens of 'she doesn't know us, and has no idea if this news will change our minds about this adoption' yet she handled it soooo well.  I asked him what his thoughts were and how he felt about the news ... he said "let's pack our bags b/c we are going to China soon".  We both feel complete peace.

This all reminded me of that first hospital visit when I was 5 mths pregnant with Azlan. It was ALL grim news. They kept unloading all of this info on us. We walked out smiling. Let's have this precious baby and do all we can to help him thrive!

We feel the exact same way now.  Information is power. Let's know how we can best help him. We are focused and passionate about doing whatever we can to not only bring him home quickly...but help him thrive.

Talking with Dean tonight I asked him (because so many of you ask me) "did the thought occur to you 'what in the world are we doing'?" he looked at me and said "no" We both know this is right in the center of where God wants us to be. This adoption is as much about our heart as it is about these 2 precious little boys.  God is transforming us and the constant surrender of every ideal we had...is no doubt...a beautiful thing to God who already sees the end from the beginning.  He is the Author. He knows how the story ends.  We are just going to let Him write the book.




5 comments:

  1. He's a precious little soul that needs a mommy and a daddy that will love him just the way he is - just like God loves us. There's nothing perfect about any of us, but God's love is and we have the choice to share that love. Thank you for your love for little Taizi and we are praying he is in your arms very soon!

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  2. Praying for all of you and hoping you can travel as soon as possible!

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  3. My heart pains for dear Taizi... but I am so thankful God has placed him in your family where he will be surrounded by love and compassion... and passionate parents who will fight for his medical care and needs. I'm so glad you had such a compassionate doctor to do the analysis... praying you hear news SOON!

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  4. Cameron and Erin S.ClairJuly 20, 2012 at 10:58 AM

    Janice,...we are sending much love and prayer to your family. We are so thankful that God does write the book! Thank you for being faithful!

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  5. I found your blog through Both Hands as we are hoping to do a Both Hands project ourselves in the next couple of months. It looks like we will get to go to China around November . . . we are waiting for our "Letter of Seeking Confirmation" now. http://palmersworld.blogspot.com/2012/06/fortune-cookie-was-right.html

    Thanks for sharing your story. I hope you are able to travel very, very soon.

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