Katie’s DEXA scan results are in…

February 1st, 2012

…and they showed her bone density to be so low that she barely has any bone mass.  Dr. Strauss told us yesterday afternoon that her level was so low as to be unheard-of.  (We were expecting to hear this; her bones hardly showed up on the scan.)

The simplest way for me to show you where her bone density is on the scale is to send you to this definition of standard deviation on Wikipedia.  Please look at the diagram of the bell curve in the top right-hand corner.

Anything that falls outside of a 2 in either direction of a bell curve is considered abnormal.  Someone whose level of bone density is -2 on the bell curve has osteoporosis.

Katie’s average bone density is at –15.  For comparison, using a bell curve to measure her level of malnutrition, she fell at -11.

Dr. Strauss said that the process of rebuilding bone is very slow, and because she is starting at such an extreme deficit, it will take years for her bones to get to a healthy level of density.

We are continuing to take precautions to protect her bones from injury.  There are also several treatments to help her heal.

~Katie will be receiving a medical therapy which will require IV treatment for three days every three months for one year.

~And we will continue the nutritional therapy with bio-available vitamin D and calcium, as well as other nutrients like high amounts of protein that are building her overall health as well as feeding her bones.

~She can begin using the stander!  This weight-bearing therapy will be a valuable help to build her bones.  God met this need in full before we had even begun to seriously research pediatric standers.   To realize the significance of this provision, please check out the prices of Squiggles Standers on this page.   The givers also sent some extra attachments, some of which cost into the hundreds of dollars each.  Wow.  Thank you, G family, and thank you, Lord!

 

Jesus loves Katie, this I know…

For the Bible tells me so…

 

Little Katie to Him belongs…

 

Katie is weak, but He is strong…

 

Yes, Jesus loves Katie…

 

Yes, Jesus loves Katie…

 

Yes, Jesus loves Katie…

 

The Bible tells me so…

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44 Responses to “Katie’s DEXA scan results are in…”

  1. Mandy says:

    She’s just beautiful! Can’t wait to see if she’ll have a head of curls!

    So glad to hear there is a plan of action to help Katie heal and overcome what has been done to her. She’s thriving!

  2. Beth in Atlanta says:

    Beautiful, bright-eyed, laughing little girl!

  3. Kendra says:

    LOVE seeing her sitting up!  She’s turning into a ball of pudge! Beautiful, just beautiful!

  4. M says:

    Katie may be physically weak, but to have survived what she’s survived, she is surely the strongest of the strong.

  5. Jennifer says:

    Oh my goodness, look at her sitting up and being happy about it!  Such a precious jewel!

  6. Ginger says:

    You know what? I can see the Down Syndrome now. :) You couldn’t see it before because she was too skinny! Now that she has some fat on her face, I can see it. Precious!

  7. Wendy says:

    She is so precious!  She looks a lot like my little man from Albania!  What a work God is doing.  To Him be all the glory!

  8. Jane says:

    Oh those pictures!!!!
    My prayers will include Katie’s bone mass in specific and for her healing in this area.  Much love…

  9.  Love love love these pictures! Brought tears to my eyes looking at them and reading the words of a favorite childhood hym. What truth in those words!

  10. Holly says:

    Oh look how she has grown!  Her chubby little cheeks beg for kisses!  That last photo is just perfect!  It looks like she is enjoying sitting up now!! 

    I am saddened to read the severity of her bone loss, but I have faith that each bone will get better with the right treatments.  She is a survivor!!

  11. Valerie says:

    I loved the song!! It’s so true.  We all can feel His love for her!

  12. Holly says:

    I forgot to say, “Thanks Susanna for the hives!!!”  LOL….

    I haven’t dealt with standard deviation since my junior year of college.  Statistics was almost responsible for me dropping out of college.  Thankfully, I finished (with an A mind you) but anything relating to statistics makes me slightly sick.  ;)

  13. Susan says:

    What a lovely little girl Katie is becoming, as her outward appearance begins to reveal the true beauty that was kept from her for so many years. Curls, bright eyes, happy smiles, and long eyelashes…what a little sweetheart. It looks as if Katie is not only enjoying her big sister’s concert, but is also very proud of her new accomplishment of  sitting with little assistance. 

    I am so thankful that Katie will be receiving the medical help she needs to strengthen her bones. Once spring really arrives, sunny days will help her create her own vitamin D, and Katie looks as if she may tan lightly without danger of burning, given her dark hair and eyes, so lots of outdoor activities may be just the thing. Is there a sandbox for her and Verity? Messy, but so much fun! 

    Best wishes and thanks for the updates…
    Susan in KY    

  14. kim says:

    My 3 yr old son was sitting on my lap looking at Katies pics.  This is his comment.

    “The little girl is HAPPY!” 

  15. Brenda Lamey says:

    I love seeing her curls!  She is so beautiful! 

  16. Missy says:

    Sitting up by herself. What a big girl. And are those curls appearing? What fun. Now Mama, don’t cut those curls off! No more practicing for a career at Hair Cuttery! 

  17. Holly Douglass says:

    So sad to hear about the lack of bone mass. Praying God works his miracle with her bones. So cute to see her happy face and her sitting up.  Hope she is less resistant to sitting up now.   Cannot wait to see her in her stander.  I couldn’t figure out how it operated.  I’m guessing she gets strapped in it some how. Maybe you will post a pic of her in it.  Blessings

  18. Lea says:

    Oh my WORD is she so cute!  Love, love, love the curls!  And that grin….

    My mom is dealing with “severe” osteoperosis right now and her standard deviation is only a -4 1/2.  I can’t even imagine – we have to be so careful with my mom and she’s a fully grown and otherwise very healthy adult. 

    Your whole family and that little cutie-pie of yours will certainly continue to be in our prayers as her treatment continues. 

    Lea

  19. Tara says:

    This post made me cry! Katie is so beautiful, her sweet face is so full of light. I don’t even know you, but I pray for your sweet family and think about Katie often. Thank you for being such a great example for the rest of us!

  20. Theresa Mitchell says:

    That amazing and beautiful smile; what a beauty she is!  Who would have ever thought that she could be so plump and happy in such a short period of time.  Only God!! (and and a wonderful family full of love)

  21. April says:

    sigh. oh I just love her.

  22. Lori says:

    What a beauty…looking at her photos just makes me melt!  And I LOVE the song that goes with them.

    Prayers being said for her bone density to improve.  Thinking about her numbers makes me feel ill.  Thank God for sending you to save her life.  God Bless all of you!

  23. Alysia says:

    She truly is a miracle child! I just love seeing her shining face. I will pray for her bones too. Thank you for sharing her story and all of your family. 

  24. Katie is beautiful!  Love her hands, feet, checks and smile.  This girls is a treasure.  I’m praying that God will continue to work miracles in this sweet girls life.  

    I was thinking of the verse God gave me when we started our adoption process, I Thessalonians 5:24 Faithful is He who calls you and He will also bring it to pass,  when I noticed these verses,  16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.-1Thessalonians 5:16-18.  It’s hard for me to do this all the time but it is a good reminder.  No matter what is happening we always have something to rejoice over, we can continue to pray and being thankful keeps us humble.  I will rejoice in all God has done for Katie but continue to pray with a thankful heart.

    Bless you. 

  25. Rita in Spain says:

    Could she be any cuter!! What a smile!! and I see she is putting up with sitting up on her own! YAY!!!
    As for the bone denisty – wow, what a testiment to all she has been thru…It makes me mad ……and yet I still feel so thankful she has you all…in the end Katies story does have a happy ending….
     
    HUGS (and thanks for the update!!)

  26. Tina says:

    She looks so happy to be sitting up! Everytime I read about her NOT wanting to do something, the next week you post a picture of her doing whatever it was she was so opposed to. With a smile on her face, no less! Magical, magical, child!

  27. Debbie says:

    *smiles*
    *chubby cheeks*
    *sitting up*
    *bright eyes*
    *little piggy toes*
    *curly hair*
    *precious gift*
    thanks for posting the dexa results – the numbers are frightening.  is there any evidence of broken bones?  if not – what a wonder – with the less than sensitive treatment katie recieved in her old life, that her bones are intact, even though they are so weakened.  is there any chance that katie could recive IV infusions at your home with a visiting nurse or something?  do the drs think it worthwhile to give her a port for access rather than having to deal w/the pokes every month? 
    thanks again for the peeks into your beautiful life!

  28. Karen says:

    So sad that she was so malnourished. It’s unbelievable. Her cheeks are looking so plump. Beautiful.

  29. Karen says:

    Hi Susanna,
    I can’t find an e-mail address on the blog for you so I will ask you this way. I am getting ready to leave to meet my daughter. I have been working on a video that I want to show at church before we go. I am hoping to use Katie’s photo in it and wanted to make sure that it is ok with you. Please e-mail me if you can.
    Thanks, Karen 

  30. Susanna says:

    Emailing you, Karen…

  31. mary says:

    Praise God for her
    She is beautiful 

  32. Rilla says:

    How beautiful she is and how far she has come already. Her bones will heal in God’s time just as the reat of her is healing.

  33. She is getting so chubby and cuter all the time!

  34. Angiedawn says:

    She is SO beautiful……..SOOOOO beautiful……..

  35. Katie says:

    It makes me so angry that the orphanage workers allowed her to get into such a fragile condition that requires such extensive treatment… when all they would have had to do, is feed her right.  I imagine the reason she doesn’t have multiple bone fractures is only because she remained bedridden – it’s hard to break a bone when you’re just lying there in a sad, lonely existence.  There is just no excuse for that kind of treatment.  I am saddened that human beings can be so different to a child’s life.  That so many people relegate children with Down Syndrome or other disabilities into a category of ‘defective’ or ‘inferior’ – as did Hitler with so many various groups, including the handicapped.  It dehumanizes the children and allows those people to treat them with such indifference and think nothing of it.  How terribly sad.  I wish that everyone could see, that EVERY life has value.  

    But I will not allow my righteous anger to become my predominant emotion in this situation – instead, I will be thankful that God has brought Katie out of that place, saved her life, given her to such a loving and beautiful family, and is healing her body and her heart a little more every day.   I am thrilled to see her sitting up, and look  how happy she is, how she’s just absolutely grinning and glowing with joy!  Every moment with you must be an amazing experience for Katie, who never had even the simplest of pleasures (like sitting up or being held) before.  She knows you’re safe now, that you love her, that you’ll care for her… she doesn’t have to be stressed over her life anymore… and she can experience the pure joy of living.  How absolutely beautiful.  

    I also wonder about something like a picc line for the IV treatments, was that discussed?  I believe placing a port requires general anesthesia which I know you are trying to avoid, but I think they can place a picc line with only local anesthesia.  And it would be no more bothersome when not in use than her feeding tube.  Just a thought.  

    So glad to see through her photos how well she’s doing and how she’s overcoming the obstacles placed before her.  Bless you and your beautiful family. 

  36. Theresa says:

    Crying as I look at her gorgeous pictures- what you have done in such a short timehas truly saved one life and touched countless others. Her cheeks filling out are beautiful. Your family is blessed.

  37. Mandy says:

    Yay! Katie is sitting up! Such a lot of work this represents, such an important milestone! Our family is praying for her and you.

  38. Thank-you for sharing you hearts, lives, and treasures with us.  It is such an encouragement to see precious little Katie thrive with your family.  45 years ago my cousin was told to put her newborn in a home and forget about him.  They told her he would never be anything but a crib-baby because of Downs Syndrome.  He lives in a group home in Stillwater, works, deposits his check, takes care of himself, enjoys life and loves people.  30 years ago a friend had a baby with DS and we were there the night they told her.  She has worked with her since she came home from the hospital.  What WE would have missed if she were not a part of our world.  Prayers for you and yours always-you are treasured.

  39. Rosemary says:

    To paraphrase your song just a bit …

    Jesus KNOWS Katie!
    This I love!!! 

  40. Amy P. Philly says:

    I can’t belive this is Katie. Really, this can’t be the same girl I sat with at CHOP. It is amazing, wonderful, a blessing…even to an adoptive mom who knows all of this to be true. It is incredible to see. It is an amazing blessing. Hoping to have our Bulgarian sweetness home soon:) Bulgaria was an incredible place!!!!

  41. carriejoy says:

    thank you for sharing Susanna. Whenever I see your posts I share them with my friends and we have quite the little love-following for you and your family. Praying for your continued strength and courage in this, praising God for the healing that is happening (looooove her fat little feet!!!) I am just in awe, awe, awe. There are so many miracles in this one tiny person I cannot bear the joy in my heart. How you manage to continue just normal living is a huge testimony imo! I do not know that I could overcome the temptation to just watch her all. the. time.

  42. Ohhh, I just can’t get over her little chubbiness! Praise God! 

  43. Aunt Erma says:

    Sitting up!   Wow!   You wouldn’t think so with all the bone density problems.   Indeed, she may be weak, but He is strong!

  44. Carey says:

    She has changed the world for so many familes and former orphans!  God bless you sweet girl!

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