School Days

I'm so over fighting with the school district and it's only just begun! Ive already been lied to and manipulated and its only the 4th day of school. Fourth day of school for Olivia and Emily that is, Marissa hasn't started yet. Our school district is telling me that they have NEVER provided a private nurse for a student that it is regional centers responsibility. Regional Center is maintaining that they provide RESPITE hours only and by definition respite is to be IN the clients on home ONLY. So the respite nurse going to school with her isn't even an option. I cant ask her medical insurance for a private nurse, the respite agency must file that. Now if only I could get a respite nurse lined up, then maybe I can start the next ball rolling. Most of the respite agencies only provide LVNs and RNs supervise. Marissa is out of scope of practice for an LVN so finding an agency has been a challenge. My worker(regional center) called to tell me that she found *a* nurse, yes only one who is able and willing to do the respite for us. I sure hope I like her(which means I must be able to trust her with my daughters LIFE--and I've been told I have pretty ridged standards, um wouldn't you?) Tomorrow the school psychologist, speech therapist, medical coordinator and teacher are all coming out to my house. The psychologist and speech therapist are coming from 9:45-11am(I drop Emily at school at 8am, Olivia at 930 I pick up Emily at 11) The medical coordinator and teacher will be here at 130(I pick up Olivia at 1255 and my daycare child arrives at 2) Can you say my plate is full? Marissa will be getting her speech and psych evals (finally, though I'll admit the psych eval is the LAST thing I want to deal with emotionally right now) And I will be asking for home hospital for her(home teacher) I refuse to allow her to go to school until SOMEONE provides a private nurse for her. In the meantime I will transport her to speech, PT, and OT and the home teacher can visit us a few days per week. I know the school wont be happy with my decision but frankly I don't care. My mama bear is stronger with this child than any other she is so sensitive that something as slight as holding her syringe 6inches higher than what I normally do for gravity feeds will result in her vomiting. The temperature of her formula isn't *just* right and she'll have stomach cramps and diarrhea. All it takes is one bad bout of diarrhea entering her line because it isn't held out of the area just right and she could end up septic and die. I wish I were just being dramatic, my child is literally that sensitive and fragile how could anyone possibly expect that I would just send her off the school on a bus to the wilds of a bust elementary school that is no doubt over crowded under staffed with ONE available RN for the ENTIRE school? They must be crazy, I wont do it. that's my story and I'm sticking to it! Eventually when the camera, cables, charged battery, and 15minutes of free time all find each other I will upload pictures. In the meantime I need to start dinner and I think I smell a dirty diaper(lucky me!)