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Harper Marie’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Latest Journal Update

Gramma you need to tell everybody about school!

Yes, Harper.  Gramma has been really bad about updates.  So here we go.

it's been a long winter for Harper.  We are grateful that she has been very healthy and made it through with no hospitalizations.  She began school the week after easter.  of course she got a cold the second week!  Our new cover photo is her at school today.  it was taken by the wonderful Miss Belvy.  She is loving school.   She goes three days a week from 8"30 - 11:30.  She rides the bus with Belvy.  I've attached a picture of her first day!  It was a teary one for Mommy and Daddy.  Many of her classes are outside.  she has always been an outdoor girl.  Today she saw a new neurologist.  Her current seizure specialist retired.  They are beginning to wean her phenobarbital.  this is one of four seizure meds that she takes and one that is the most sedating.  Please pray that this wean is successful.  being able to have one less sedating medication will definitely improve harpers ability to learn and give her a better quality of life.  She continues to be trached but we know it serves a good purpose in keeping her healthy.  she has been growing like a weed.  she weighs 36 lbs and is 36 inches tall.  She is such a happy child, always smiling except when she's not happy...then she cries.  this is new.  While we don't like to see her cry, she hadn't had tears or made any noises in two years.  So the pouty lip, the little tears and the wimpering noise were all wonderful signs to all of us.  Harper loves her little sister Teagan.  She smiles at her.  Teagan loves to sit with Harper and play toys.  Teagan has been healthy too.  She is very small and of course the docs have to begin all the tests and scare the heck out of all of us.  The last metabolic test came back today normal for Teagan.  Tara and Teag are seeing GI tomorrow and genetics on Friday.  We are hoping and praying that this will finally put to rest the overzealous testing that has been going on for the last month.  Here's a few pics.  Harpers first day of school.  Today at school in the ball pit and Teagie saying grace!   Tonight I am grateful for a week of good news!