Guest Post: Peggy Edwards- Esra's Trust

Esra was born with severe Spina Bifida; neurological, orthopedic, cardiac, respiratory and genetic impairments; along with cognitive, motor and speech delays. Esra does not currently walk or stand, and crawls with difficulty. While she uses her arms to propel her manual wheelchair small distances, without a mobility device Esra barely moves from where she is initially placed. When Esra was 21 months old, her parents starting searching for ways for Esra to move independently and to explore her world. As devout Latter-day Saints, they knew God would help them and provide a way. I am so blessed to have Peggy here today.

                                                                            Enjoy!!

                         

                                   

                              Hello, my name is Peggy and I am the mother of this beautiful little girl born in coastal Connecticut. My husband, Sam, is an active-duty Coast Guardsman and I manage our home with Esra and her younger sister, Estelle. As a four year old, Esra is friendly and happy and always ready to say "hi" and then give a hug.

    In May 2010, we relocated with the military to Arizona.  After six months of settling in, the last box was finally unpacked.  We are glad to know where everything is as life is in full-swing.  Sam usually has to take time-off from work to manage what I can't, which is everything above and beyond caring for myself and the children, as I, too, am challenged physically and otherwise.  Our family couldn't function without his steady paycheck, benefits and his help with medical appointments, respite schedules, legal issues with the Trust, Tricare wrangling, general bureaucracy and rebuilding our complex care team.  Plus, he is the one that helps Esra with her CPAP each night, does the evening med/cath/enema routing, loads and unloads the Snappie from the van and generally all heavy-lifting and bending.

    Esra and her sister are busy with their home preschool, plus taking violin lessons from me and enjoying the children's program at church each Sunday.  Life is kept quite simple since Esra is medically homebound because of her compromised immune system.  Incorporating a a whole food diet is essential to keeping Esra healthy.  

I emphasize a diet with only whole grains, fresh produce, natural sugars, no preservatives and no food dyes.  (However, there are days where Trader Joe's saves me!)  I am considering the GAPS diet (Gut And Psychology Syndrome) to address the bowel/brain connection.  On a good day, probiotics, fish oils and vitamins are added.  But that is when the budget and memory allow. We have eliminated cow's milk too, since Esra is hearing impaired thanks to chronic sinus issues.  She is responsive to sound, but we still use a creative combination of oral language, picture exchange, sign language and pointing at our house. 

    Esra was essentially non-verbal until four years old.  That is when her two year old sister jumped into full sentences.  The past six months we have heard more varied words and a growing repoitoire of two- and three-word sentences.  

Everyone in the family uses ASL vocabulary, but almost immediately after she starting using her Snappie, her spoken abilities have increased.  She is gaining greater oral motor strength daily.      

     

She and Estelle like to do the part from "Singing in the Rain" where the film's sound gets off track.  Estelle will say, "No, No, No" and Esra will giggle back "Yahs, Yahs." 

If it isn't movie musicals, then you can find us watching Little House on the Prairie, Signing Time! or Blues Clues. Six months ago, before the Snappie, her TV watching requests would have been in ASL.  But now all her requests are spoken! 

We are carefully watching how a long list of issues interact and affect her daily life. Keeping her out of a classroom setting has greatly helped in stabilizing her health. What isn't known is how a rare genetic disorder of the 6th Chromosome will ultimately affect her.  

    It is called the "Double E Deletion"  because it is named after her.  Her constellation of symptoms cluster around the mid-line of  the body, with the brain, face, airway, spine, bowel and bladder altered in someway by the missing DNA.  Our main focus is the neural tube defect or Myelomeningocele caused by the deletion and all that comes with it.  

For Esra, that includes:

Hydrocephalus
Heart Defect (Coarct of the Aorta)
Neurogenic Bowel and Bladder
Agenesis of Corpus Collosum
Chiari II Malformation
Apraxia
Obstructive Sleep Apnea
Sub Mucous Cleft Palate
Scoliosis and Lordosis
Developmental Delay
Speech Delay
Hearing Impaired
Non-Ambulatory
Fine Motor Hypotonia
Hip Dislocation
Exceptionally Friendly
Gorgeous complexion
Radiant smile
Infinitely Patient