Update from Emily!
Ellia started PT last Friday. She did well. The therapists recognized her from all the pictures on Facebook and were very impressed with how far she has come already! We will continue to see them on Fridays until they think she has regained her strength and control.
This may be TMI, but some of you have asked how you can continue to pray - It has been two weeks since Ellia has had a bowel movement so we are hoping that will happen soon. Prune juice isn't working so the doctors may try helping her out with stronger measures.
We said goodbye to my beautiful mama yesterday as she boarded the plane back to Florida. I have no clue what we would have done without her!!! I miss her so much already. Thank you, daddy, for letting us keep her so long up here! We are still in shock that this week will mark 4 weeks since the beginning of this whole thing! Thanks for flying in at the start of it all and leaving 4 weeks later! Thank you for being parents who would move mountains for their kids!!
Ellia update after chatting with her doctors- From Ellia's mom, Emily.
She is recovering from botulism faster than any baby they've seen....my little fighter. She came to the hospital faster than most so we caught it early. They let her nurse today!! She only ate for a few minutes, but hallelujah!! They are hopeful we can move out of the PICU sometime next week to a general floor. Thank you all for your prayers and support!! We are headed in a good direction!
The goal is to raise money to offset the cost of Ellia's hospital Bills. Three month old, Ellia, has Infant Botulism and is fighting hard! The cost of the Anti-toxin alone is more than most people make in a year and insurance won't cover all of it (not to mention the other hospital bills). So we need your help!
The amount we need to raise might increase once we have a better idea of what insurance will cover!
Sweet Ellia's story by Emily, her mom.
Sunday night, July 7, was the last time Ellia wanted to eat. Monday she didn't seem like herself. Ellia is the happiest baby I have ever seen. She smiles, giggles, and coos all the time. She doesn't cry. On Monday she was fussy, had a faint cry at times, and didn't want to nurse. We thought she had a little bug and just kept our eye on her. She never ran a fever at all. Tuesday morning she didn't smile at me at all so I called my husband, who had worked the day before, and through the night, and into that morning at the hospital- he is in his last year of medical residency. I told him I felt that something was very wrong with our daughter and that I was taking her to see our pediatrician.
We saw a pediatrician at our pediatrician's office and she told us that she has only written lethargy in medical charts twice. It's a big deal medically and means that Ellia needs a complete work-up. She said Ellia was lethargic and wanted us to go straight to the Children's Hospital in town...Children's Hospital of the King's Daughters. Ellia's grandfather is a pediatric anesthesiologist there so he drove me while grandma watched my two older boys. My hubby left the hospital he was working at and met his father, Ellia, and me in the ER.
Her spinal tap and other tests came back a little puzzling with no firm direction, but they felt led to admit her anyway.
The first night was rough but no where close to the personal hell we went through Wednesday and Thursday. Up until then they felt like it could be a virus. She still had not eaten anything since Sunday and had not had a bowel movement since Sunday. Wednesday night she laid limp and lifeless. She moaned a dull moan all night. It broke my heart. I went into the bathroom and sobbed...I knew something was really wrong with my baby. Thursday morning I pleaded with my husband and the doctors. Her color wasn't right. I begged for further testing. I felt it could be organs or even her brain.
They started the scans right away, but they came back all clear. That's when they said they were concerned she may have guillain barré syndrome. They immediately called the neurologist. He came in, took one look at her, and said, "This baby has botulism!"
The nurses and doctors started moving fast. The room was filled with people and they were moving her to PICU. My dear friend, Sarah, who is a pediatrician was with me, and started explaining what was happening. I'm so grateful she came to visit at the perfect time.
Botulism paralyzes the body. My baby had become paralyzed and was slowly dying. Praise Jesus the doctors knew what was happening to her. Her airways had become "floppy" and she was struggling. She couldn't swallow (which is why she had stopped nursing)...my poor baby! They have intubated her so they can help her breathe. She was administered the anti-toxin and now we wait. We have to wait for her body to fight this awful (I have a few other words I could use to describe it) toxin.
She is solely breastfed. We don't live around construction and she is always in my arms. It comes less from honey that other sources. She didn't have access to honey. The CDC is testing the soil/dirt at our house to see if maybe the boys picked it up playing outside. Somehow she ingested the spores weeks ago and it has slowly been paralyzing her since. The Neurologist said 85% of the time we never know how. He says its just a part of life. We caught it in time!!
Please continue to pray that her body fights, that she doesn't get secondary infections, and that she has a bowel movement. I've been pumping and they feed her. Please pray I can provide her with enough milk. Her story has travelled all over the world and so many are thinking of her and praying for her. It brings comfort to this mama's heart. Thank you all!
We will keep posting updates and in a few weeks (hopefully less) you will all get to meet my happy, sweet Ellia in a video!
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