Lily Kay...and CAH

For the last few months Lily Kay's CAH (Congenital Adrenal Hyperplasia) has been giving us fits.

Her doc thinks she hit a growth spurt and she has apparently "outgrown" her dose...and we've been trying to play catch-up.  

What this means?  Instead of one blood draw every four months...we're about to have her third blood draw in that amount of time.  Blood draw....talk with her doctor's office to get the results, and see how to further adjust her "white medicine".  (She takes two different medicines, three times a day.)

We've begun using a little 7 day pill organizer for LK's meds.  She loves it!  It is the highlight of the week when it is time to refill.  I think the other children are jealous and they've helped before also.

With the recent frequent dosage changes, having the pill organizer set and ready to go gives me peace of mind.  So now when my phone quacks like a duck, LK runs to her pill organizer and we talk over what she's supposed to grab out of it...easy peasy!

Our most recent appointment with the endocrinologist had LK taking another X-ray to show her "bone age".  The results were not what we'd hoped.  We had previously been able to "freeze" her bone age at 8y10months for over a year...but this time her bone age had advanced.  When we did this X-ray, her chronological age was 7 y 4 months, but her bone age was past 10.

This is all such a balancing act.  Her numbers from blood draws need to look good or else we have to increase medicine.  If we increase medicine too much it will stunt her growth (the doctor actually mentioned the possibility of LK needing to take growth hormone at the last appointment).  If her bone age reaches maturity (13-14years?) then she will be done growing any taller.  Which could leave her significantly shorter than average....under 5 feet?

Balancing act.

And she?  Handles it all like a champ.  She asks questions ("why don't they have to do blood draws?") and complains some...but it is all very appropriate and understandable.  And she does it a whole lot less than I would if I were her.

Earlier this week it was time for a new implant to hold precocious puberty at bay.  We did the first implant almost two years ago, when she was five.  That first time, we didn't know what to expect and it was kind of traumatic (moreso for me even than her!).

But this time we knew what to expect...and G and E came along to help cheer her on.

Lily Kay did great.  Through the shots (to numb the arm) and through the tugging on her arm to pull out the old implant, and through the insertion of the new implant.  (There is a little mini-sheet covering so she can't watch, but from my vantage next to her head, **I** can see all of it, uuuggghhhh. )
And then through the stitches.  She really amazes me.

Truly, this girl amazes me.  How she handles everything that is thrown her way...it is a lesson for me.  The Lord has big things in store for her...and I can't wait to see how He uses her.  


  1. GOOOOOO LK!!! Your bravery, sweet girl, amazes me! We love you!!

  2. Yes, He does have big plans for you Lily Kay. You can do this strong one and we love you. Phil 3:13
    And Mom, you are amazing for keeping up with all of this like you do--WTG!
    love y'all

  3. Praying for Lily Kay and her medical issues. Remembering when we first saw her in China and how much she has changed since then. She was such a sweet little one, and now she just keeps blossoming every day! How beautiful she is!

    janet and gang



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