I feel like we are hitting another one of those "walls" you often experience with a kid with special needs. Therapy is going so-so. Our neurogeneticist is supposed to be getting back to us with details on where we go from here... two months and no new info. Our neurologist seems to have gone missing and Abby is sadly over-due for an appointment with him. Getting denied for DDD. Having a tough time finding ways to afford the extra "things" she needs.
It's all a bit frustrating. While we are not sitting around spending our time thinking about RS all day I do want to make sure that all of her specific needs are met. Monitoring her fluid levels and head size, keeping an eye on her motor progress, watching that she doesn't have any more problems with her eyes, and plenty more.
Hopefully things will get moving soon and we can get a little more back on track.