ellajoandgrandmabearpatti

Welcome to our lil’ Ella Jo’s Journey.

 

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Dear Reader.   Please consider a financial donation to this family right now.  Funds are needed for a multiple list of issues, to say the least of those being simple everyday living expenses.  It also includes legal issues.   Or, perhaps there is something that could be sold on E-Bay, or Craigslist that you no longer need and those funds could go towards helping this family out.  Or, maybe you have an idea for a fundraiser?   Please know that when you give, you Bless and are Blessed. 

 This is no ordinary family experiencing the wrongful removal of their child.  This is a precious RETTS Angel in dire need of her family.  EllaJo’s physical, mental and spiritual health are at risk.  Please, whatever you can do will be hugely appreciated.  Gratitudes and Thanks!

  Definition of a Friend:  

A person with whom one is allied in a struggle or cause; a comrade.

It only takes one Turtle.

 Please take a moment to watch this wonderful video above. 

Just click on Turtle. 

 

Update:  Monday, October 24th, 2011    Ella released from hospital and back to the same foster home.

Update:  Wednesday, October 26th, 2011     Ella now has PNEUMONIA!   Please pray for her!

 

CLICK ON THIS ANGEL BELOW TO LEAVE A PRAYER FOR ELLA JO AND FAMILY

— AND TO CHECK ON HEALTH UPDATES.

 OTHERWISE, PLEASE LEAVE A GENERAL COMMENT ON THIS PAGE.  THANK YOU.

 

 

BELOW WE HAVE OUR VIDEOS.  PLEASE VIEW THEM —  THEY ARE SPECIAL!

 Loving EllaJo      You And Me Against The World        When I Cry        My Heart

 

 Ella Jo’s Story

 

September 22, 2011

 

     Please hear my heart, I’m Maternal Grandmother of a beautiful 3-yr old Rett ‘Silent Angel’ baby girl.   MY FAMILY IS DESPERATELY REACHING OUT FOR HELP!  Our Angel has been taken by the State,  they believe she has been abused…. SHE HAS NOT!  Sadly they are not educated about a Rett Angel or Precocious Puberty!  All close family members have been extensively investigated  and Polygraph/Voice Stress tests have been performed, with all  passing.   The detectives investigating our case, sees the loving family we are, and sees how very fragile our Angel is.    Ella’s 2 other siblings in the home have also been put into foster care, under ‘Protective custody’.   

 

        Our Rett Angel is not a typical Rett Girl in that she suffers from very severe seizures that stops her from breathing and she turns  ‘code blue’.   She also has ‘Rett seizures’ from fright.   She suffers from very severe hypotonia:  “Hypotonia is a state of low muscle tone often involving reduced muscle strength.  Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.”  Ella Jo is in Precocious Puberty also.

 

      Ella Jo’s history of accidental & pathological fractures started when she was 1-year old.  Ella Jo is not able to assimilate the nutrients in her food, therefore has a weaken bone structure.   The seizure medicine that Ella Jo had been on for half her life also deteriorates bone mass!  The doctors failed to suggest Ella Jo needed Vitamin D & Calcium supplements to prevent this!     Click to read:  Osteoporosis in Retts children  is only one of many tragic complications that comes with this disease.   At the age of 1-year,  a family member fell with Ella Jo, clutching her tightly on slippery ceramic tile and accidentally broke her femur.  This is indicative of her condition, (see all the moms emails that has had fractures with their children!) as it is with some Retts children — and it is indeed, an exasperating continuous DAILY learning period for every Rett parent when helping your child deal with Retts Syndrome. One break came from an in home PT worker doing pressure therapy on her arm.   As a result of her last incident during a bath, Ella  Jo slipped out of loving hands and that placed her in the hospital with a Halo.  

 

        And, as a result of that accident, and false accusations made by the hospital they notified the State authorities, and subsequently placing Ella Jo (& her sister and Dusty’s daughter also) into the foster care system.  This occurred due to institutions, facilities and doctors/nurses/staff not fully understanding the dynamics of Retts Syndrome OR PRECOCIOUS PUBERTY.  The TRAUMA that has created for the entire family and  Ella Jo is unbelievable!

What we, as a whole family know is that Ella Jo has never been around anyone that would have intentionally or knowingly harmed her in any way.   These outlandish accusations only add to the complicated issues surrounding Ella Jo’s health issues with Retts and is indicative to this illness.  To make such accusations, merely shows their inadequacies of a medical evaluation AND TREATMENT, in my opinion.

 

      We are seeking the assistance of experts in the legal fields, in advocacy, in nursing, in doctor’s care … all in an effort to help us with our battle to get our baby back into her home where she rightfully belongs.  Ella  Jo’s  older sister, Tyler & Dusty’s daughter Bree, have also been removed from the home.  With any suspect of a child being harmed, ALL children are removed.  There is no one that knows how to take care of Ella Jo’s daily needs other than her Mother, and her family.  There have been times the  hospitals have asked us for help and advice on managing Ella Jo.   We have TRIED to educate the Foster Lady on how to manage Ella Jo, and that is minimal at best.  Ella Jo requires a lot of care and familiarity with those she is most in tune with.  We know her every move and sound,  and I know her Mommy has eyes in the back of her head and ears like an elephant!   Over a dozen times, her Mommy & Dusty have brought Ella Jo back to life with rescue breaths after severe seizures.

 

      Ella  Jo, our “Silent Angel”, cannot communicate verbally like a normal child.  She  ” eye-gazes” with us and us only — as we are her foundation and can react accordingly.   Now, she is in an environment where everyone is second-guessing these actions.  Ella Jo over reacts to feelings of fear, strangeness and anything out of her comfort zone … she can not handle, and goes into a “Rett type of fear seizure.”    We are acutely concerned with the foster home being 70+ miles from Ella  Jo’s hospital.

 

       The last time Kylie visited Ella Jo in the hospital, for the allowed 1 hour supervised visit,  my daughter thought she needed to explain to her daughter why she has not been there for the normal 24/7 stays she was doing.  Kylie told Ella  Jo:  “You will be getting  out of the hospital soon… I want you to be Mommy’s big strong girl…. you will be going to another house, not ours and they are a nice family.  I want you to know that Mommy is at home fighting bad people to get you back and will never stop fighting for you.  You will be home soon.  Remember Mommy always loves you and our hearts are connected.”   My daughter started to cry, kissed her baby and left her room.  She forgot something, went back into Ella  Jo’s room and found our Silent Angel …. for the first time …. with tears rolling down her lil’ cheeks.   My daughter’s heart was broken seeing her baby respond like this.  Our baby girl totally understood all of  her mommy’s words.   Feeling completely overwhelmed, my daughter went to the nurse station and asked them to please read a book to Ella  Jo, as her baby was crying.

 

      Our Silent Angel Ella Jo went from having dedicated, loving, committed and attentive family members surrounding her life  24/7 to only being allowed a 1-hour supervised visitation per week from her Mother.   Can you imagine how this 3- year old’s is wondering where her family is?   Not being able to assimilate the disappearance of everything familiar to her and being thrown into an environment completely foreign?  She cannot comprehend why her family is not around.   She cannot ask those questions.  We must find answers for her, and therein lies our battle.

 

       It doesn’t take much processing to understand that this is EMOTIONAL ABUSE TO A CHILD perpetrated by the hospital and states’ agencies mis-management!  Not all cases should be handled ‘by the book’! The state social worker told my daughter that “special needs children get 4 hrs a week with their mother”, yet Ella Jo still only gets the 1 hour per week.

 

       This is a very special needs child, a silent Rett Angel — and she belongs home with her family!

      Please do not even forget what the other two girls are going through.  They are with family members, but not allowed to see their Mom or Dad other than 1 hour a week.  Tyler has not been able to see EllaJo for 3 weeks now.  Her first visit will be this Friday!  Grandparents have been denied visitation for now 3 1/2 weeks, as I am told there simply is not enough staff by this State Agency to make a supervised visitation possible.

 

      Please hear our pleas for help to assist in correcting this horrific wrong in Ella  Jo’s and our family’s life.

      We are needing funds for legal support, and the general maintenance of dealing with this life crisis.  Please if you can, donate using the PayPal button on the right column, and anything you contribute will be forever appreciated.

Thank you,  Ol’ GrandmaBear Patti… I WILL protect my cubs.

CLICK ON THIS ANGEL BELOW TO LEAVE A PRAYER FOR ELLA JO AND FAMILY

— AND TO CHECK ON HEALTH UPDATES.

OTHERWISE, PLEASE LEAVE A GENERAL COMMENT ON THIS PAGE.  THANK YOU.

 Click This Angel Below to Read the Personal Testimonies of other RETT Mother’s and their children.

 

 

 

 

 

 

 

 

 

A Sister’s Love

Letter to Ella  Jo from Tyler

 

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