The Good News

Amidst the struggles of seizures, there have been some really positive developments I'm excited to share with you all.

 

This fall Wes has started attending the preschool program at Anchor Center. We've been going to the infant and toddler programs since Wes was 10 weeks old but the preschool program is a big change. I now drop him off in his classroom with the 4 other students for 2 hours a day, 2 days a week. It's a step of independence for him and letting go of control for me. Until this point, I've been actively involved in all of his therapy and education, but now I leave him in class and trust that they will do what's best for him and will help him grow and develop. And you know what, he loves it. He is truly thriving in preschool. He is using his gait trainer (kinda like a walker) to move himself down a really long hallway between classrooms, he is socially engaging with his peers, he is eating a ton of purées during snack time, and he is aware of the routines of his class. We are so proud of him and in awe of how fast he is growing up.

Since he is doing so well at Anchor Center, we are taking another big leap and sending him to a public preschool two days a week starting in January. He'll be in an integrated class with 16 3-5 year olds, about half special needs and half "typical" peers. It's at a school designed for special needs students which has a ton of resources to help him access the same activities as his peers. We are cautiously optimistic that he will blossom as he learns from and with his peers but I am also terrified to drop him off in a new environment with people I haven't already learned to trust.

The other amazingly good news is that he is eating again, a lot! We are no longer using his feeding tube during the day because he is so willing and excited to eat. We are working our way up with textures and are now able to do stew like meals with small chunks of veggies, meat, rice, and pasta. In the last 6 weeks we've gone from him eating 2-4 ounces of very smooth purées (mostly applesauce) 2-3 times a day, to him eating 5-8 ounces of chunky purées (which have substantially more calories) 3 times every day. It's amazing to us and we are so thrilled that we're making progress towards weaning him off of his feeding tube. He is still getting a 10 hour feeding of formula overnight to make up the rest of his needed calories and most of his hydration but this is a huge step forward for him. We've also finally reached a point where vomitting is a sign of illness for him rather than part of his everyday life. For so long he was vomitting 10 times a day, then 10 times a week, then 5 times a month, and now I would venture to say he vomits barely more frequently than any other almost 3 year old.

 

Maybe it's the comparison with him and his sister but more and more he looks grown up. Wes loves school, loves to eat, and has a little sister that is fascinated by him (and he thinks might be pretty interesting as long as she's not taking away too much attention or is too much in his personal space). We are thankful for our family and feel tremendously blessed by Wesley and Waverly and each of their uniqueness.