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    Posted July 2, 2014 by
    Eekah341
    Location
    Kansas City, Missouri
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Macy, my gift from God

     
    My name is Erica Enderle and I am the adoptive mother of a beautiful two year old girl. Macy was placed in my home when she was four months old. She had been having uncontrolled seizures while in her birth mother's care and spent approximately two weeks inpatient at Children's Mercy Hospital. When she came to me, she had an NG tube, several medications and was semi-comatose. In the two years I had previously spent fostering, I had never had a “medical child”, so this was a whole new world to me. I got to learn about Epilepsy and Diastat pens, how to insert an NG tube and check for placement and how to administer CPR to an infant. With careful diligence and routine feedings, Macy was able to come off the NG tube only 3 weeks after being placed with me. Although delayed, she was eating orally. We were linked to several clinics at CMH and I met some amazing doctors and staff who helped me to learn how to best care for Macy. Over the next year and a half, we were seen in Neurology, Ophthalmology, Cardiology, Primary Care, Rehab, Plastic Surgery, Nutrition, ENT and Dermatology. We were also linked through Missouri First Steps for an evaluation and services. It seemed that, with every new appointment, came a new diagnosis. I encountered new medical issues and spent a great deal of my time researching them. By 6 months old, Macy was diagnosed with Epilepsy, Cortical Visual Impairment, GERD and Cerebral Palsy. I began noticing issues with Motility and we started trying medications such at Lactulose and Miralax; both epically failed. When she started eating pureed foods, I made all of them for her. Even though she wasn't legally mine, she was “mine” and I was striving to provide her the best life possible. She participated in PT and OT through First Steps and began vision therapy with a teacher from Children's Center for the Visually Impaired. Her immune system was very weak and she was sick frequently. In November 2012, Macy was placed inpatient for RSV and stopped eating orally. On November 19, 2012, another NG tube was placed...I was devastated. I spent so much time at CMH Clinics, in the ER and inpatient with Macy that, in late November, I was forced to quit my full time job as a social worker. I battled for two months with this fact, but finally came to accept that this is what God wanted for me and for Macy. I pushed for in home nursing due to her health status and we began services in January 2013. Due to a failed swallow study, in January 2013, a G Tube with Mic-Key button was placed. She was put on Pediasure and drastically gained weight and began having significant issues with mucus production and sleep apnea. I pushed for an ENT referral and sleep study; this was granted and it was determined that Macy's tonsils and adenoids needed to come out and ear tubes needed to be placed. I was unhappy with the Pediasure and pushed for a consult with Nutrition; we got the green light to switch to a soy formula and to start a partially blenderized diet. I make all of Macy's blends and strive to include all the food groups and provide her with the best nutritionally rich foods. I began to see amazing changes in Macy's health and energy. I also began noticing a significant decrease in seizures. I met with her Neurologist and asked about tapering off some of her medications, specifically Phenobarbital. Macy participated in a 72 hour EEG through the CMH Epilepsy Monitoring Unit in November 2013; it was determined that she was no longer having seizures. She had T&A surgery in December 2013. I went from suctioning her countless times a day to not even needing a suction machine. Macy is now completely Phenobarbital free and is making amazing progress. In July 2013, I was blessed with the opportunity to adopt Macy. I thank God daily for her and I have promised to be the strongest advocate for her that I can. I know that her struggles are far from being over, but I am determined to give her the amazing life that she deserves. Life with Macy has not been easy.  Her wheelchair is heavy and awkward.  Just to go out of the house, we have to pack her food bag, emergency Mic-Key and syringes in various sizes.  People stare and ask questions like "What's wrong with your baby?".  I cry almost daily, mourning the life that Macy will never have.  She can't walk, she can't crawl, she can't tell me "I love you, mommy"....I never knew just how desperately I wanted to hear those words, until I knew my daughter couldn't say them.  We have lovingly nicknamed her Puppet, as we have to do all her moving and talking for her.  Our life is not conventional.  Due to Macy's needs, I'm a stay at home, full time foster/adoptive mom...last year, we welcomed Macy's sister, Tasha, to the family.  As difficult as things get, Macy is my shining star.  She brings a smile to every face around her and all her "brothers" and "sisters" love her dearly.  Friends and family closely follow her page on Facebook, eagerly awaiting the most recent video, picture or medical update.  Although Macy may never walk, get to see a rainbow or pick a flower, I know she'll be okay because her life is beautiful just the way it is.

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