Adeline was born August 21, 2017 the day of the total solar eclipse. During my pregnancy we called her a little pineapple after growth charts compared her to the size of a pineapple. We were excited to welcome our sweet little pineapple to the world. We knew she could have some problems, but had no idea the extent those would be.
Adeline was diagnosed with Aicairdi syndrome when she was 8 days old. When she was 2 weeks old we found out she was blind. She had her first seizure (a partial seizure) at 7 weeks old and was diagnosed with adrenal insufficiency then too. She started having infantile spasms at 3 months old. It seemed like every time we saw a doctor a new diagnosis was added: scoliosis, hip dysplasia, Phelan-McDermid syndrome, hypothyroidism, diabetes insipidus, plus many more. The doctors considered Aicairdi syndrome her most impactful diagnosis. Adeline had a GJ-tube put in when she was 6 months old. Adeline was on numerous medication’s with some working more than others. She had numerous hospital stays and many procedures. Despite all this Adeline had her own little personality. She was spunky, and would babble nonsense sounds. Our love for her could only grow and she seemed to bring out love in others. When Adeline was 16 months old, she became a big sister to her brother Oliver. Eventually, he started calling her Lady Pineapple.
We went to our first Aicairdi Syndrome Foundation Conference when Adeline was 11 months old. It was overwhelming at times but also was where we meet people who have become great friends. These people understand our hopes, fears, anxieties and what our life is like. We love our Aicairdi family!!!
When Adeline was just over two years old, the right posterior part of her brain was having nonstop, seizure activity. Her first brain surgery followed shortly after, and seemed successful. Unfortunately, about a year later, the seizures got much worse again, after difficult decision making it was decided that Adeline would have a total hemispherectomy. During this brain surgery her right temporal lobe and part of her hippocampus were also removed. Although, her EEG was much better Adeline lost most of what little ability she had and now sleeps most of the time. But when she’s awake she loves music and being cuddled. And she still had some spunk. Her seizures have been difficult to control with very few medication’s working however, she still brings out the best in people and is our sweet pineapple. We couldn’t love her more!