Abigail Marble Updates…
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The following information was written prior to the Pig Bowl in August 2016…
Here is a little of our story. Our marriage started out as most typical marriages do, excited about starting a family together and having a happy ever after. We celebrated our first son’s birth, Isaac in 2004. We had so much fun with him, we knew we wanted him to have a sibling, someone to play with. So in 2006 we were excited to welcome our daughter Abigail into our family. We had no complications at birth but noticed by 4 months things didn’t seem quite right, she wasn’t able to hold her head up like other kids that age. My sister-in-law encouraged me to have her see a neurologist. I will never forget that day.
It was Valentines day, Abby was 6 months and we were headed to Mary Bridge Children’s Hospital to have her appointment. Her appointment went well, but there were going to be many tests ahead. We had MRI’s, a nerve test where they inserted small metal rods into her arms, no numbing, and used electrical shock to see if her muscles reacted, many blood tests and finally muscle, nerve, and tissue biopsies. Finally almost a year after starting testing, we got the diagnosis, Mitochondrial Disorder. There is no cure and her type is not able to be treated. Our only options were to do therapy and a special vitamin regimen to keep her healthy for as long as we have her. We have been told that her condition will take her life before adulthood.
Life was busy raising Isaac and Abby, therapy and going to LOTS of doctor’s appointments. We decided, even though there was a chance we could have another child with Mitochondrial, we got pregnant again. I think I cried the whole pregnancy, concerned we would have the same issues with this one. Praise the Lord, the day Ezekiel was born, he could already hold his head up and look around the room. I knew he would be okay.
A few months later, Gaven switched from being a youth pastor to law enforcement. His first position was at Seaside Police Department. We moved from Eatonville, Washington to a small town called Naselle, Washington. We needed to stay in Washington to keep Abby’s medical coverage. This was a tough move. We were nowhere near family and it ended up being the toughest years for Abby and our family.
I found a lump in my chest and was told it was a fatty cyst. I told them take it out and when they did, he told me it wasn’t cancer, it was fibromytosis, a cyst that grows fast and can attach to vital organs. I had another surgery to remove the last cells, but received a call a few days later, telling me that he was not able to get it all and that I needed to see an oncologist at OHSU to have more invasive surgery. I was mortified and on top of it, Abby had started vomiting that morning and she was now vomiting blood. We rushed her to Children’s Seattle where she was hospitalized for a few days with a bowel obstruction. Abby came home but seemed to have a hard time gaining weight. She was under weight and no matter how much I increased her g-tube feeds, she would not keep down the extras. I had my final surgery at OHSU where they removed a rib and a half and part of my abdominal wall. No more surgeries, just annual MRI’s to make sure it doesn’t come back.
In 2010, she got sick again and we decided to go to Portland’s Randal Children’s Hospital, closer to family. During that stay, the doctors recommended her to get a PICC line in her arm to help increase her calorie count. So now, she would be fed thru her veins. That was a rough year, she finally started gaining weight but with it came over 135 days in the hospital with line infections and many other illnesses. I remember one stay, she was so ill we thought she wouldn’t make it home. But she pulled through again. The next three years, we were in the hospital anywhere from 60-75 days a year. Her condition causes any little illness or cold to cause her colon to stop working and she ends up throwing up for days, thus the long hospital stays. Thru it all, God gave us the strength to continue, one day at a time!
In 2012, Gaven got a job with Wasco county Sheriff’s office. We needed to be closer to family with my family in The Dalles and Hood River and Gaven’s in Oregon City. Since moving here, we have added another member to our family, Josiah, a healthy rambunctious little boy. Now with a family of 6, we are busier than ever. Abby has been healthier in the last year and half with only one hospital stay. God has blessed us with a little more normalcy. I am blessed with boys who are patient with their sister and all the therapies, doctor’s appointments, hospital stays and all the things we can’t do because of their sister’s condition. But they sure love their fishing and hunting adventures with Gaven. Abby is non-verbal, can’t sit, stand, or walk. Life with a wheelchair is very limited and the heat and cold can really affect her too, but the Lord has given her a love for music and she loves to play her tambourine. Abby loves most types of music, but I think her favorite is the Leap Frog Dog she got from her great grandma. You push the button and she smiles the biggest smile ever. You can’t help but smile with her. I think the Lord knew we needed Abby in our lives. It causes us to slow down and just enjoy the good times, despite the tough ones. And I will have to say, Abigail is the toughest, most loving and patient little girl you will ever meet. Please, come say hi to her.
