Tuesday, February 7, 2012

Neuro Update

Lily had her EMG and Nerve Conduction testing today.  Things started off well, we brought along a brand new Mickey Mouse DVD.  She was anxious to see it.  She was happy to see her doctor and gave him a high five.  It's always a bad sign when the doctor tells you that she won't be his friend for much longer. 

Sweet girl focused on her new DVD while Dr. Pierre gets everything ready

Keeping a close eye on things as the electrodes are attached

Lily happily sang along with her DVD and counted with Mickey Mouse as the test started.  As the electrical pulses increased, she got a funny look on her face, started to flinch and tried to scoot closer to Trent and me.  Then, we heard the cry that I had hoped I'd NEVER hear again...the howling that we heard several times in China.  Big tears were rolling down her cheeks while mine were dripping on her pillow.  Poor Trent said he didn't know which one of us to comfort first.  It was so hard to see her hurting!!  Next, came the bad part...what???  It got worse?  YES!   Needle electrodes were inserted in her itty, bitty arms and legs into the muscles.  I wanted to grab her and run, she was pitiful.  It took about an hour to finish but it seemed like much longer.  I was so relieved when we got to pick her up and comfort her!!
 Back to her silly self once we left Children's

The only good thing about this testing is that we got immediate results.  Lily does NOT have any nerve damage.  Her neurologist is certain that her weakness is some type of myopathy (muscular disease).  Now they just have to determine what kind.  That involves a muscle biopsy.

So, our orthopedic specialist and neurologist are both ready for surgery.  Our sweet girl will have have hip surgery to hollow out her hip sockets, tendon releases for her hip contractures and a muscle biopsy.  It is good that our doctors will work together and be able to do all these things during the same procedure.

The question that we have been asked most in the past two months is when Lily will have her surgery.  Well, we can now answer that one:   March 5, her birthday :(  If we didn't take this date, we would have to wait until the end of March.  This is also the week before our Spring Break, so Trent will have a week off to help us get adjusted to the body cast.  We will be planning a huge birthday party the week before Lily's surgery.  

Lily is ready for surgery and a body cast.  She understands that this will help her to straighten her legs.  We've started watching videos of other children in body casts and explaining everything to her.  Silly Lily is already demanding that her "hard pants" be blue.  "No pink, no green, Mei Mei wants blue pants"!  
She will hold two fingers out straight and make the walking motion.  She knows this is the first step to help her walk and she wants to do it!  When she found out we were going to the doctor today, she held out those fingers and smiled so big.  She thought today was her surgery and she was excited!! 

Lily is ready and I'm getting there.  I still can't imagine her being rolled away from me on her way to a major surgery.   Scheduling this surgery has been difficult for me, I just don't want my baby to hurt.  All of her doctors agree that it is the right thing.  Her hip contractures keep her from straightening her legs, so she must have the tendon releases done.  I have no doubt that Lily will be fine.   We've said it over and over, God has huge plans for her.  We are reminded of that daily.

“Therefore strengthen the hands which hang down, and the feeble knees, and make straight paths for your feet, so that what is lame may not be dislocated, but rather be healed.”
Hebrews 12: 12-13


  1. Your blog was the last thing I checked last night and the first thing I checked this AM, so eager to hear Liliy's results. Praise God for negative test results! I know this is rough on all of you, but isn't Lily lucky to be placed with just the right family to help walk and have the best life she can have? Same for Emily Margaret, God picked the perfect family to help her hear and speak. None of us is willing to "settle" for our children, we want the BEST for them, no matter what it involves. God is and will continue to provide the strength and time and resources it takes to give our children what they need. And isn't it just awesome how they take everything in stride? They are so tiny, yet so strong...how can we be any less? Love you guys, and will continue to pray for you!

  2. Yeah for negative test results! But poor Lily and poor mama!!! I have had to watch my children endure painful medical tests and it is absolutely terrible. From the picture, it looks like she recovered quickly. :-)
    We will keep Lily in our prayers...for a successful surgery and a smooth recovery. So funny that she has her mind set on a blue body cast.

  3. I'll make sure Lilly gets put on the prayer request list every Tuesday at First Priority!!! I'll tell Jamie about it too so if I don't make it in time, Lily will still be on it!!!!!! :) :) :) Gonna pray for her outside of First Priority too!!!!!!!!!

  4. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


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