Amazing how fast two years goes by! Dante has been busy. He is in the second grade, loves school and his friends, and has been working hard in therapy outside of school. Here’s an abbreviated recap of the last few years.
Dante has grown a TON. He is getting so tall, which comes with the setback of making his legs harder to move. Dante’s legs continue to turn in, which has gotten significantly worse over the last year. It is extremely difficult for him to straighten his feet and bring his heel to the ground when standing. After a few trials of Dysport (a generic form of Botox), Dante had some major regression in the progress he made during all those PT sessions. The medication did its job reducing spasticity, but that came at the price of wiping out all Dante’s muscle strength. For months he could not bear weight in his legs, which made it so difficult for him to get around on his own and eliminated any sense of independence he gained. He is slowly gaining back strength through all his hardworking in physical therapy.
It was heartbreaking watching him go through such setbacks when he was doing so well. Before the injections he was standing independently while wearing KAFOs and was very close to taking steps in them. This was the first time Dante was ever able to stand up without holding onto anything. And he could stand for several minutes at time.
This school year Dante has started making steady gains in speech therapy again and we are so proud of him. He is learning to use an AAC app on his iPad to communicate with others. He is still learning how to interact with the app in a functional way, but has been doing very well with it. Dante’s verbal speech still consists of single-word utterances that he is able to combine with sign language or gestures to communicate. His list of verbal words and approximations keeps growing and we just love when he says a new word, such as “barber” or “Dumbo.”
Dante appears to have (knock on wood) outgrown his febrile seizures and now has shorter, focal seizures. Even though he still has occasional seizures, we are grateful that they are not the prolonged ones he had as a baby when rescue meds didn’t always stop them. Now they are quick and he comes out of them on his own. He has had a few incidents of cluster seizures, but he still comes out of each one pretty quick.
Thank you for continuing to follow us on our SPG52 journey. Hopefully it’s not another two years before we chat again!