Boy, it's really been a while since I've posted an update.
School:
It has been going really well for Ben. His signing continues to improve every day and we are now starting the transition process to Kindergarten. We have a lot to figure out for next year. The biggest is how to transport him around school since using the wagon isn't an option and his wheelchair is just too darn heavy for me to lift in and out of the car twice a day. Converting our van to be accessible also isn't an option because that would get rid of the whole second row of seats (from what we have been told) and a caregiver needs to sit next to Ben to suction his trach and hold his trach when he gets mad and tries to pull it out. We are looking at purchasing some sort of collapsible, light weight wheelchair.
Ben has also started going to a special sensory room at school called the "Rainbow Room" for 15 minutes every day. The purpose of this room is to give him a lot of sensory input so when he returns to the classroom, he is more focused. So far, he loves going to the room but hates leaving it and cries so we haven't seen the actual results of being more focused. Like everything with Ben, it takes time before he comes around.
Medical:
Ben started vomiting again today - and he doesn't seem to be sick. I'm just worried the vomiting cycle is starting again and he can't afford to lose any weight. This weekend we will know if it continues every morning.
Nursing :
We still have our 2 day nurses and 2 night nurses. Any days they can't work, we have done ourselves and it hasn't been too many or too bad doing them.
4 comments:
Excited to hear that Ben is starting the transition to kindergarten! Hard to believe it's already time for him to move on from preschool. Will kindergarten be a full day next year? I know the state is mandating full-day kindergarten at some point, but I'm not sure when that's supposed to go into effect.
Leslie-they aren't doing full day Kindergarten next year. They don't have the money or staff so they applied for another waiver. Who was Katie's aid in K?
Thanks for the update...it has been a while, but you are very busy! Hope that the vomiting is not a new cycle. Please keep us posted!
Glad to hear they're not going to full-day kindergarten next year. I think that is just too long of a day for kids that age, especially our kids who have so many things going on and tire out so easily.
Katie's kindergarten aide was Dawn Wilkinsky. She is WONDERFUL!! I'd put in a request for her if I were you. They'll tell you they can't guarantee a request, but they usually come through. Who will Ben's support educator be? Katie had Barb Bradley. She was great, too.
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