Tuesday, May 21, 2013

No News Has Been Good News


For the second time we have gone past Day 21.  

Actually, it looks like we are going to beat our previous record of 29 days.  

Emily is on Day #30!!!


This is the first round that Emily has been on the medicine the whole time.  She is up to the full dose of amitriptyline, had an EKG yesterday, and the cardiologist says she is good to go.  We were warned that  it might take up to four months for us to see whether or not the meds will be effective...but at least we know for now that they are helping.  We are SO THANKFUL!

To recap: Emily has Sato cyclic vomiting syndrome.  There is a possibility that she also has Long QT.  If I understand correctly, in Sato CVS the ACTH hormone is 600% of normal when an episode begins. Once an episode starts there is nothing anyone can do to help; we just need to get her through it.  The goal is to prevent an episode from beginning.  She is on amitriptyline, CoQ10, levocarnitine, and propranolol to help.  Long QT is an electrical problem in the heart.  The doctor is not convinced she has this but is treating her for it.  The propranolol also helps this problem.

Earlier in the year we were hearing the phrase "failure to thrive" a lot with Emily.  No longer!  In the last two months she's gone from a size 4 shoe to a size 5 and moved up to 3T....except her legs-they are still around 18 months.  I suspect she will not qualify for physical therapy in early intervention which is great!  She's doing a stiff-legged jump and trying to gallop.  She's still about six months behind in speech.  We may hate ourselves for pursuing that once she is totally verbal.  She's starting to fuss at being left behind with mom.  She defines the opposite of chronically depressed.  

Good health is not feeling routine.  I cringe a little every time I see Emily rub her belly or rest on the floor or leave something on her plate.  

******

We finished school last Friday.  We had a marathon couple of weeks since we doubled up to finish.  IT WAS ROUGH!  We expected to be in China in September so last summer we did school on Mondays to get ahead a little.  It worked out pretty well.  We all agreed we wanted to do it again this year.  We took yesterday off but books are ordered and we plan to begin next week.  Kaitlyn will be starting kindergarten so I'll have four in school this year.  I've been accused of being a homeschool "lifer".  Perhaps I am...but I don't own a denim jumper or goats and my babies were all on formula - so I guess I don't totally conform to the image.   

The kids are counting down the days until their cousins come from Mexico.  Dennis and Machelle and co. will be here June 4.  There's a bunch of things I'd like to get done before then.

Milk Dud Report:  We hired a new employee.  He's a cousin of Domingo's.  At 1:00 p.m. we're switching to three times a day milking.  I think Kenton said he has 225 acres of corn planted.  He switched to no-till planting.  We hope it is a good call.  A couple of years ago, the last corn went in the ground in July so this is a bit of a switch.  I think Carl started planting the soy beans.  

There's a little girl named Audra who just came home from China four weeks ago.  She's been sick most of that time with mysterious fevers.   She is having a bone marrow biopsy today.  Her family has been through a lot of upheaval.  If you think of her please pray.  



2 comments:

  1. Ah - I have goats.... I nursed my babies.....but no jumpsuit. So I guess I'm ok for now. Such good news about Emily! Praising God with you!

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  2. NO goats, definitely NO denim jumper or even a skirt.....some bottles some not...who the heck cares!

    And if you homeschool for the next 20 years or only the next twenty days it makes no difference except to you and yours! What a privilege to live in America where we have such freedom and choices. :)

    GO HOLLY! Live and laugh and love....

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