Supporting Annabelle Bishop

                        Annabelle Bio

Annabelle is the little girl our family prayed to bless our home. We were delighted when we found out she was on her way and Madelynne would be a big sister! Early in the pregnancy, tests began to tell us that Annabelle would throw a curve ball into life as we knew it. September 20th, 2011 she entered the world via emergency c-section, with a tiny cry. Seven weeks premature, the NICU staffed rushed her away before we could meet our daughter. She fought hard those first hours and pulled thru the night. The next morning we were able to visit our newborn for the first time. We scrubbed in, wore a protective gown and walked past all the frail tiny babies of the NICU. In the back right corner of the room was Annabelle. As a mother, you look forward to seeing your baby for the first time – anticipation, joy, excitement and love flood from your heart to theirs. When I first met Annabelle, my heart sank. I looked at the nurse in disbelief and said, “This isn’t Annabelle, this isn’t my daughter”. With the heaviest, most guilty heart I share these first moments with you - I did not see the daughter I had dreamed about. The 4lb baby with monitors, cords, tubes and wire was not the baby I prayed for or imagined she would be. This child terrified me. There is a motherly instinct and bond that happens when you meet your baby, that instinct landed my heart onto the floor harder than you can imagine. I asked my husband to take me back to my room. I laid in my bed, motionless and refused to see visitors. Wide-eyed, silent and broken. Later that evening, alone in the hospital, I asked a nurse to take me back to the NICU. I scrubbed in. Dressed into a gown and walked past all the other tiny babies. The nurse pulled a chair close to Annabelle’s incubator, I sat down and introduced myself to her. In that dark room, late at night with no other visitors, I met my daughter. She had the same name as the child I carried in my womb but she was not the same baby I had imagined. She was Annabelle. Full of her own thoughts, ideas, personality, opinion, strength and love that I never gave credit to before I knew her. I sobbed while holding her tiny fingers and grieved over the baby I thought I would bring home but thanked her for coming into my life and choosing me to be her mommy. I promised her we would be ok, she would be ok and we would fight together, no matter what the road ahead of us will bring. She will complete our family and I will love her with every fiber of my heart from that day forward.

The first year was bumpy, but Annabelle was able to thrive while on an elemental amino-acid based formula. She gained weight but did not meet milestones such as sitting up, crawling or walking. When we began to introduce foods, her body reacted violently. Around 9mo we began the visits to specialists. We knew the road would get difficult, but we did not have any idea what it would be. We did not have a diagnosis or any direction from our doctors. We spent each and every day watching Annabelle and reading her clues that we hoped would lead us to her mystery diagnosis. At 18 months, she was becoming increasingly ill. For a year her health was failing. Her body was becoming weak and not able to fight infections or illnesses. She couldn’t eat or drink without choking and/or screaming in pain. We were in the doctor’s office and/or hospital almost weekly. March 16th, 2013 we handed our baby girl over for the first time to a team of surgeons and anesthesiologists. Fear does not describe the hour it took until we saw our daughter again. She was hysterical, crying, disoriented but alive. Our GI met us in recovery with very heavy news. Four days later he called to validate our fears, biopsy’s confirmed our daughter had Eosinophilic Esophaghitis. An incurable auto-immune disease that will forever change our lives.

The immediate treatment option was to remove all foods from Annabelle’s diet. She could not have anything to eat or drink except a specialized medical food she drank in a sippy cup.. and purified water to rinse the awful taste of the formula from her mouth. We also placed her on multiple medications; compounded acid blockers to help repair the bleeding sores in her stomach wall and heavy liquid steroids to help repair the damage caused by the disease. She deteriorated rapidly. The 9 months following Annabelle’s diagnosis became life or death and we never knew which direction we were headed. She began with screaming pains that prevented her from sleeping, inpatient hospital stays couldn’t provide answers for what was causing her such pain. Then began the seizures. She stopped growing, she lost lots of weight and her height stature came to a halt. Her endocrine system stopped maintaining its body temperature, the summer heat would send her body to a 105 degree temperature spike and then plummet to 93 degrees within 30minutes. She began having menstrual cycles. She couldn’t walk and spent much of her days dragging her body along the floor. While Annabelle ultimately ended in a place where she would spend nearly 22hrs a day sleeping, we spent our nights consoling her big sister from nightmares and answering a 4 year olds questions about death & what heaven is like. Madelynne told us one night, “Jesus stays with Annabelle all the time, he has angels that watch her sleep and he told me that I don’t need to worry anymore, that he will make sure she is ok and that heaven is a nice place.”
Our world was spinning out of control.

The amount of doctors appointments we shuttled Annabelle too is countless. The hundreds of needle pricks and blood draws has left her numb to the pain and she no longer cries. The MRI’s, CT scans, Brain scans, EEGs that require a non-sedated 3hr straight jacket experience that has forever traumatized her from claustrophobia. Countless Surgeries. Procedures. Endoscopies, Biopsy’s, Tube Feedings, Tube Changes, Burning raw skin off her feeding tube site that lands her in shock from the pain. The tears from a toddler that requires speech therapy, so her eyes tell her stories. Her eyes plead for you to stop the pain and make the doctors go away. The depression from a toddler that lays in a stroller and watch children her age play on the playground. It makes your world stop.

I tell you this because we are an ordinary family. Very ordinary, our dog sleeps on the sofa even though she isn’t allowed. I buy generic cereal and we stretch our pay checks. Our daughters are the best of friends with the most hilarious belly laughs. AK and I argue over what to have for dinner because neither of us want to make a decision. We spoil one and curl up for a movie every evening after the girls are in bed. Our family is ordinary. We are tired, stressed, funny, we love to laugh and host cookouts. We are ordinary in every way, except one. We have a little girl that needs a lot of help. We have heavy hearts that stay filled with worry and grief. We are humble, faithful and hopeful. But we are scared.

AK and I both work full-time. The cost to keep your child alive is astronomical. As parents, especially as a mom, I should be home with my daughter. Spending our days together, taking her to appointments and cherishing moments that are not guaranteed. But reality reminds me that when my child is screaming in pain and needs help, the $480 prescription at CVS doesn’t go home with us unless we have money. Pharmacy’s do not take payment plans. Our travels to specialists hours away cannot take place unless we can fill our car with gas first. While the easy assumption is that the parent should be home with their child, the reality is that we cannot. We work night and day, we are beyond grateful to have jobs that allow us to afford Annabelle’s prescriptions but the costs are never ending and the money quickly runs out as we seek more and more answers for our daughter.

Annabelle loves to laugh. She has the biggest heart and enjoys being outside the most. She loves swimming, and playing dress-up. Her personality is contagious and it’s impossible to not smile or laugh even when she’s on her worst behavior and then gives you that sly smile that ensures she is wrapped around your pinky. She dreams of the day she can go to school but reality tells us it may not happen. We have employed a nurse that has been an answer to our prayers. She fills the shoes of a mommy when we are not home. She kisses boo-boo’s and rocks her to sleep, she changes feeding tubes so we no longer have to inflict that pain on our own child. One day, if our dreams come true, she will also accompany Annabelle to a school, just like her sissy. Annabelle loves music, Taylor Swift is her favorite. She has a soft spot for Minnie Mouse, anything Frozen (and she WONT Let It Go!).
She loves to dance. She is rebellious and a tomboy in a tutu, she thinks she is a Teenage Mutant Ninja Turtle and karate chops all my couch pillows. Annabelle is so full of life and never misses an opportunity to embrace each and every day she is blessed.

Annabelle is a long way from safe in this life. We have multiple diagnosis under our belts but none of which explain her global illness. Doctors from Johns Hopkins to Boston Children’s Hospital and all in between (MCV, Bon Secures, King’s Daughter’s Hospital etc) have all warned us that we need to focus on finding answers for Annabelle. Our first priority changed a year ago; we decided after years of fighting and mental / physical torture on our child and drained checking accounts; we would slow down with the testing and focus primarily on her quality of life. Doctors had to sit us down, as parents, and diligently explain how important it is to Annabelle that she enjoy her days. We hired our nurse immediately and life has flourished for our baby girl since. Her hope and laughter was the best medicine. It’s returned her will to fight and survive. At this point, we believe she is strong enough to begin fighting again. Our doctors agree we need to move back into gear of finding answers for Annabelle. The only way to treat and control Annabelle’s disease is to understand her Global Diagnosis… we need that answer. We need to know what Annabelle’s Mystery Global Diagnosis is so we can help her, so we can find the best doctors, so we can educate ourselves and continue to be our child’s biggest advocate! She is strong, determined, she can communicate to us now and stable – we need answers if we ever wish to keep her in this place, we need help. We need so many prayers. We need the financial means to find the answers. We need a miracle and Annabelle deserves one.