Everything is fine here. Her infusion last week went very well. They said next month we will just check her blood work and go from there so hopefully we will not need anymore. She also goes to the Cardiologist next month. I can not believe we are coming up on 2 years post transplant. Time has flown. I am not sure what all she will need to get done as far as testing goes. I know they want her to have a hearing test and eye test soon. I might call and get that scheduled at the same time.
Dani is loving daycare now. It seems like all the kids get along pretty well. She really loves Ms. Macy (her teacher). They are having a pajama party for Halloween. I am sure she will have a blast especially since they are ordering Pizza (her favorite).
She did get assessed last week for special services through the school district. They seemed to doubt she would qualify for much of anything. It is a bit frustrating because I want to keep her on track for school and they are only looking at current abilities. Anyway that was just an initial visit. She will be evaluated fully in November.
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I'm an OT working in a school district. Unfortunately, sometimes therapists are unable to use their common sense and must abide by the rules ... which often make no sense at all. Even if Dani doesn't qualify immediately, you can request a re-evaluation at any time (some districts require prescriptions from the dr. to do so). If you see any sort of delay at all (provided she doesn't qualify) request a re-eval. Also, remember that you have all of the power ... the school will never tell you that but that's the truth. You might want to look for a child advocate to help you through the process of getting deserved services for your child. Many states have organizations that volunteer to help parents fight for their children's services .... including legal services if necessary. I've worked along with our local advocacy group and they are wonderful. Fight for what you want for Dani!!
My son was given a primary dx of MPS yesterday..They say not to get worried until the second positive result comes back; Im worried. I have been researching nonstop. But, as for the school try using a 504 with the qualification of OHI (other health impairment) A 504 is designed to come into play when a child has an illness that one could reasonably determine will cause school related delayments, even if they do not qualify for Article 7. And, the 504 virtually guarentees the same protections as Articl 7. I am also an IN source advocate for special needs children in education. Good luck..
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