Alden Update: 2 years old

Alden continues to show slow, but steady, advances. In gross motor skills we have seen increasing trunk stability leading to sitting with very little support. He is also incredibly motivated to walk, and has surprised his physical therapy team with his deliberate and determined steps. Regardless, he will be getting fitted for a pediatric wheelchair next month to improve access to school and other adventures we hope to have ahead. His fine motor skills took a big leap late summer when he started pointing! His favorite things to point at are boats and flags. He absolutely loves being out in nature, especially on the ocean. He continues to astound us with his cognitive developments, his sense of humor, his imaginative play. He has very limited verbal skills, because the motor cortex that controls his mouth did not develop correctly. Therefore, he has had to teach us how to communicate with him. We are learning to pay attention to his eye gaze, different sounds and connotations, body language, and now pointing. We expect he will be getting a high tech communication board at some point in the next year; but, spend a little time with Alden, and you really start to appreciate how much communication is non-verbal. He got a g-tube in January to help him maintain a healthy weight, and this has worked very well for him. He gets most of his nutrition in liquid form through his g-tube, but he loves playing with puréed foods, and he scoops and gets a spoon to his mouth with moderate accuracy and messy smiles. We are following his lead on food and communication, meeting him where he is at, and letting him show us what works best for him now. We do not extrapolate this year's progress into future milestones.


What caused Alden’s brain to develop so very differently remains a mystery. We are now enrolled in various research studies at Boston Children’s Hospital, Rare Genomes Project, and University of Minnesota in an effort to discover an illusive and ultra rare diagnosis. We continue to focus on the present moment and enjoy his current skills. It continues to be a challenge and privilege learning to meet all of Alden's needs. Thank you to all those you continue to reach out and check in. Sleep is so key to seizure control and he still needs a nap every day, so we limit travel off-cape with him as much as possible; but we are so thankful to anyone who wants to come visit, in person or virtually.


We have recently been approved for a service dog for Alden through 4 Paws for Ability. Alden LOVES Dogs. This service dog will be a highly trained companion for Alden, to assist him with mobility and seizure safety. The dog will be able to be in the hospital with him, and accompany him to school. The waitlist is 2 - 2.5 years, so we expect to meet our smart pup in spring 2024.




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