Ashes on the wind

Her breath comes in soft little mews.  Her mouth is open slightly, her fat little lips are dark pink, indicating a good oxygen level in her blood.  Little blond ringlets spring out from behind her ears, framing her face with a golden halo.  My little love.  My baby girl.  She is so beautiful to me.

Suddenly her eyes pop open wide and she gasps in pain. Her mouth opens wide in a silent scream. I reach over and grab her hand, pressing firmly on the meridians that run to the cranial nerves.

    "It's okay Anaya, Mama's here. Oh baby girl, it's okay, it's okay. You're doing a great job.  It will be over soon.  In a few seconds it will pass." I assure her.

Today is the third day of this.  This horrible new development in Anaya's nervous system.  It is spontaneous nerve pain.  It happens in demyelinating conditions such as MS, and leukodystrophy.  I've been told that nerve pain is agony.  Please God spare my baby girl.  A moment ago I read up on research they are doing on spontaneous nerve pain.  Researchers actually induce demyelination in mice and then torture them while measuring their nerve impulses.  Reading it made me sick.  I couldn't finish the article.  Apparently their findings were that using cannibinoids "THC" reduces nerve pain.  Anaya's had that medicine before - and we stopped using it because it made her so sleepy and dopey - but then again so does morphine.

The pain passed and she immediately falls back asleep.  I stroke her head and give her a kiss.  How many times have I kissed her beautiful chubby cheek?  How many kisses have I left on her brow?  If only each kiss could heal a little bit... I think they do.  She is so soft.  I often press my cheek to hers, wrapping my arms around her in a hug, just to feel her warm softness.  I love her so much.

Today I feel I am failing in what I set out to do for Anaya.  I wanted her to be able to enjoy the sunshine and be outside, maintaining her health and quality of life.  Instead we are inside while the wind howls and the clouds swirl with the coming rainstorm.  Last night we stayed in a hotel room because the acreage that we were staying at became uninhabitable for Anaya when the neighboring development decided to burn about 100 tons of waste brush, leaves, trees and such.  The smoke poured directly from the 20 or so burning piles of brush down the hill - directly to where the house and the motor home are.  The fire started when I was out.  Brent and Anaya had been unable to leave while I was out getting groceries and when I returned we immediately evacuated Anaya out of there.  She was having a hard time breathing.  As soon as we got her to fresh air her color returned.  I called a lady I met recently named Pam who manages a hotel here in Salem and she got us a room in her hotel.  The Shilo Inn Suites is known for "Affordable Excellence."  The exterior and lobby are clean and humble, however, the rooms are tasteful and comfortable.  The pups are even allowed here.  We met two chihuahuas in the elevator.  They serve coffee in the lobby that is fresh and delicious.  They even have a pool.  When Anaya is feeling well enough I hope to take her for a swim.  She loves the water.  Thanks to Pam we can stay here as long as we need to - without spending any of the money we raised for Anaya's new mobile care unit.

Brent has just taken the van to go get some more of our needed items out of the motor home.  You wouldn't believe the pile of stuff we have to take when we go somewhere overnight with Anaya.  That's why a motor home is so perfect for us.  Everything we need is wherever we are. 


List of stuff we must have overnight...
Oxygen condenser (40 lbs)
Oxygen bottle filler (30 lbs)
Meds in med bag
Frozen milk in cooler
Clothing for mama and papa
Clothing for Anaya
10 receiving blankets
Diapers / wipes
Syringes
Feeding tubes, bags, pump
Barrier cream
Stoma ointment
Ankle foot orthotics
Suction machine
Computer
Toiletries
Plug ins for suction, feed pump, oxygen machines, computer, phone.
Warm blankies
Anaya's special pillow
Story books.


 We need to get Anaya to the south.  I've been praying that God will show us the path soon. We already have 200 Angels and we only need 3300 more! That's not that many people!  (Our idea is that we would have enough to get Anaya's mobile care unit if 3500 people each give $10 towards it). More people than that attend a single football game. I have faith that things will work out they way they are meant to.  I need to remain strong and be patient.  Anaya has taught me patience and living in the moment.  Right now I am going to practice that.

I am going to braid her hair and read her "The Mouse and The Motorcycle".  She loves being read to. Then I am going to massage her little muscles and help to work her joints so that she remains as relaxed and pain free as possible.  Her quality of life has always been my highest priority.  She is my little love.  I would do anything for her, give my life for her.  If only it would help her.  All I can do is love her and do my best to provide the very best life I can in the time that she has.

I will shine my love on her and keep her warm in bed for now.  How I wish it was nice enough to take her for a walk outside.

Anaya's 3500 Angels.  It can be found at www.facebook.com/3500Angels 

We would appreciate help getting media involved in order to raise more awareness to speed up this process.  Not only would this help Anaya - it would also broaden the knowledge base of the public about Krabbe Leukodystrophy and newborn screening.