After 10 years as a social worker helping people "fight the system" I am now fighting it for myself (rather for Edison). I wrote a week or two ago about Early Intervention coming out to evaluate Edison for therapy. Based on their assessment they classified him as qualifying for 1 therapist (in our case a physical therapist) doing developmental intervention which mainly consists of teaching Martin and me things we can do at home. Well, when we went to the hospital this week the developmental psychologist and neonatologist felt strongly that since Edison had a 25% deficit in all areas that he qualified for 2 therapists (a physical therapist AND an occupational therapist or special education teacher). So I called our case manager to discuss this and ran into the brick wall and "red tape" that so many of my clients have encountered. The only thing I kept getting was "medical model" vs. "developmental model". And we got nowhere. So I'm trying to figure out how we're going to fight this one. And today, on the day that his therapy was supposed to start, the therapist called 30 minutes prior to our appointment time and cancelled. We may or may not get a make up date. Urgh.

Overall Edison is doing well however his choking episodes are increasing in frequency and he's having a harder time recovering from them. It is scary and frustrating for all of us, I'm sure mostly him. We are playing "musical medications" trying to get this sorted out. We did talk to our surgeon's nurse today and they moved up one of his studies that will hopefully give us insight into why these are occuring. So next week we'll go down to Philadelphia Tuesday and Thursday. Edison has quite the calendar!!

Since my last 2 posts have been very "wordy" I will try very hard to post a picture or two after this weekend.