When Elijah was born, actually before he was born, we were asked to participate in several studies. They really have little answers when it comes to HLHS, and they are working hard to get some. We agreed to the studies that did not require any invasive procedures for Elijah. One of those studies involved a study team following Elijah's neurological development. I had an MRI before he was born, he had another MRI after the Norwood, and about a month ago he went in for an evaluation. They used something called a Battelle Developmental Inventory, Second Edition which involved a parent interview, structured activities with Elijah, and observation of Elijah. The test assesses adaptive, personal-social, communication, motor, and cognitive skills.
Overall, Elijah did very well. He placed in the average range for everything. Areas of strength for Elijah were in self-concept and social skills and attention and memory skills. Possible areas of weakness were indicated in gross and fine motor skills and receptive language. All in all, Elijah is doing very well. He started walking a bit late and that was to be expected. He is a rock star. They will follow up with him in a year to do another assessment. The great thing is that they not only will give you the results of the testing, but they will also help you connect with agencies in the event that you need assistance.
There are so, so many variable when it comes to Elijah. It was a relief to know that this, at least for now, was not one of them.
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