Bennie has been fighting for life since 6 weeks after conception. Mom was gravely ill and hospitalized the whole time. When Ben was born, he wasn’t breathing.
He spent 48 hours on a ventilator. He spent 17 days in the NICU on oxygen and a feeding tube. Then he was sent home. For 11 months, we watched him throw up constantly, lose weight, fall off the growth chart, have pneumonia’s every three weeks and go in and out of the ICU on high flow oxygen.
We came very close to losing him several times. But then he ended up at children’s hospital. There they discovered he needed a nissan. His stomach muscle wasn’t working and he was asparating food and saliva. He had a major six hour stomach surgery 10 days after his first birthday.
He also had 17 blood tests. And the diagnosis was Chromosome 14Q deletion. We were able to obtain a study of infants and toddlers in the UK. There are no long-term data as it is so new and rare. We don’t know his future.
We know his lungs still at 2 and 1/2 are fetal size. They may or may not grow to adult size. Colds will always be serious for him. The only organs not affected are kidneys and hearing. We have to watch for seizures at some point in life.
He has 14 specialists and five therapists, a wheelchair, a back brace, and ankle braces. He may or may not walk, talk, stand, eat orally, and is thus tube fed. He has had eight surgeries, thousands of x-rays, four ambulance rides, hundreds of hospitilazations. He can’t even have dental work in the office.
It has to be in the hospital. We won’t know his delays acedemically until much later when they can do an IQ test. His hypotonia gives him painful constipation. And he may or may not need back surgery some day. But through it all he tries so hard to smile and be happy.
He loves to cuddle and gives the sweetest kisses. He is starting to notice cartoons and loves music and dogs barking. He is very close to his parents and siblings and started rolling at 2 and 1/2. He is finally hovering around 25-26 pounds and back on the growth charts. Huge, huge milestones. He is such a good boy and so loving through it all. We just don’t know what the future holds and this is a very tough pill to swallow. Lots of prayers and living day to day enjoying every minute with him.