Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs. She had open heart surgery at 2 months old, but that didn’t “fix” our sweet girl. She continued to have health issues. After 4 more surgeries and numerous doctor appointments, we finally got some answers. She has CP, central sleep apnea, hydrocephaly, white matter hypoplasia, abnormality to her corpus collapsing, dilated ventricles, ID, SPD, numerous GI issues (she has a tube for feeding, but can drink out of a sippy cup), cardiomyopathy, pulmonary valve stenosis, abnormality of her mitral valve and DDX3X. She is nonverbal, doesn’t crawl, stand or walk but she can sit with minimal support. She is the happiest and most laid back toddler I have ever met. She loves water, cuddling and rocking in her chair. She is without a doubt our hero!
Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs.
We finally got her diagnosis in November 2015. We have since become part of an amazing group of families and caretakers. Lena recently celebrated her 2nd birthday by learning how to crawl!
Kate is globally developmentally delayed, non-verbal and has autistic characteristics. She attends school in a severe/profound program where she continues to make slow but steady progress.
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