Thursday, April 11, 2013

Still Doing Well!

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As you can see, Emily is still doing well on Day #28.  

We are somewhat in shock but it's wonderful.  Davis' first question of the day is no longer, "Does Emily need to go to the hospital today?"  or some variation of it.

Here's the scoop
  • She probably cannot take amitriptiline.  If her QTc is prolonged every time she gets sick it would not be safe for her.  
  • They started her on a drug called propranolol a week ago.  It's used for stage fright.  They did not expect it to do much but something seems to be working...
  • Or maybe God chose to heal her.  We don't know.  Either way we are totally grateful for at least a hospital reprieve.
  • Yesterday morning she got stung by a wasp on her little toe.  She didn't shed a tear or anything.  It helps me better understand how utterly miserable she must be when a vomiting episode hits.
Several nights ago I posted something about Emily's speech on an adoption forum.  In the process I mentioned that Emily is hospitalized regularly for CVS.  Out of the blue I got an email from someone who said she's had CVS for years and offered to answer questions or listen or whatever we felt might be helpful IF we wanted to talk to her.  I've been in touch with two moms whose children have/had CVS but no one who has actually had it.  It was very enlightening and encouraging.  She's taking a very small dose of amitriptiline and CoQ10.  She went from 90 lbs and episodes several times/week to not having an episode in 7 1/2 years.  She still has to be careful and avoid triggers but has gained some weight and is working full time.  She helped me understand what Emily might be going through and many things to watch for.  It was such a HUGE blessing!

I am so grateful to those who continue to pray for Emily and for us.  It is such a beautiful thing to hear from mom that somebody from her church who doesn't know Emily is lifting her up in prayer every day.  I know there are a lot of people who are praying.  We thank God for each of you and pray that He will bless you as you have blessed our family.   We are humbled.

God bless you.


3 comments:

  1. I am so glad. And I do pray for her daily. As well as you...

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  2. Praise God! I take 40 mg. of propanalol for migraine control. I thought it was usually prescribed as a blood pressure medicine.......interesting! God can heal how and when He wants. Praying for this good health to continue!

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  3. I am soo happy for Emily & all of you! May God continue to grant healing!! Love you!

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