The New Normal

I realized today that I have not written an update since my scary post about the return of the evil seizure monster.  We (once again) have a new normal.  The new normal is being watchful, but not obsessive, about Angie's demeanor and her movements.  Waiting, but still living.

Undoubtedly, there is more testing in Angie's future but we have faith in her doctors to decide what type and when.  We have increased her seizure medication and she has had a quiet week with a few staring spells but no progression of the seizures.  Last week, in the middle of it all, Angie had an appointment with her rehab doctor, "Dr. Steve".  Dr. Steve and I have had an ongoing discussion about when to intervene with treatment for Angie's increasing muscle tone.  On this day last week-I don't even remember which day because they are all blending together-we decided that it is time.  Angie is experiencing pain with any movement of her shoulder during dressing and her hand is curling up into the shape of a ball, despite our attempts to keep it open with a splint.  It is time.  Dr. Steve will inject Botox into Angie's shoulder, hand, foot, and ankle.  The purpose is to try to (temporarily) preserve as much range of motion as possible.  Amazing that Botox, a poison, is our best hope at this point.  Poison.  I am terrified but also committed to seeking the very best quality of life available to this little angel.  And confident that my God knows best and He will lead the way.

I never could have guessed what God had in store for me back when I became a mother-still really a child myself. Thankfully, our three biological daughters had few health concerns.  I never dreamed that He would choose me to parent a child who would experience a miraculous healing.  It still is miraculous.  Despite the re-appearance of some minor seizures, Miss Angie is living a vibrant, exciting life with half of her brain doing all of the work.  She alternates between truly naughty and the sweetest, kindest child on Earth.

This is Angie reaching out for Toby's hand before she was even awake after her hemispherectomy surgery:

Loving on her brother:

"Mom, is this dangerous?":

I think we would all agree that her life is nothing if not a miracle.  The naughtiness?  I think she has earned it!  Thank God that he has allowed us to have her here with us so we could experience it all-the good and the bad.  A miracle and a wonder.