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Oh, My Spinning Head

Posted Jan 27 2009 8:14pm
Photo by Tina Guiomar


We've had such a crazy couple of weeks and every time I sit down to update the blog something comes up. We had a wonderful Christmas and Chanukah with our families. Tons of lovely food, drinks, laughs and, of course , gifts. When we came home from Balto after the holidays, our suitcase was stolen while unloading the car. Amelia's AFO's (leg braces)were in there and our laptop -- plus the only clothes that actually fit me (finally really working on losing weight) and all my makeup, bras, etc. Sucks! So there's been lots of running around replacing things -- including taking Amelia to clinic to get casts done for her new AFO's. So we've been dealing with police reports, insurance co.'s, etc. Neverending! Trying to find receipts for things, talking to Amelia's medicaid service coordinator to find out if Medicaid will even pay for another pair ($2,500!). My head is swimming.

In addition, we had to take Amelia to get her evaluated for CPSE (Preschool) this week which was exciting, exhausting, so on a so forth. Even though Amelia ages out of EI (Early Intervention for kids 0-3 yrs. old) because she has a January birthday, we have the option of extending services until September of 09. This has been our intention from the start because of Amelia's fragile immune system -- wanted to give her the extra time to be that much stronger. The first day of evaluations, Tamara, Amelia's Service Coordinator for EI arrived and promptly told me that John, Amelia's Speech Therapist -- who took 4 months to find to replace her ST who left in early August and has only been with us a couple of months -- is resigning from his NYC cases on January 27th! OY. We are also losing our PT the end of this month and have yet to replace her OT who left in October. So unless we are able to replace these therapists quickly, Amelia will be receiving less than half of her mandate. Realistically, not going to happen. We have had such a horrible time trying to find the few therapists we could. So with lots of anxiety and many conversations with Nestor, Tamara, other Moms, Roosevelt's Director (the school we're sending her to, and yes, they have availability for her on January 26th) we have decided to send Amelia to school in TWO WEEKS!!!!! I am so overwhelmed, nervous, terrified, excited, giddy,etc. I'm so not ready to send her this quickly. There are many meetings that have to take place before her birthday on Jan. 24th. We have to have her 6 month eval for EI, then a IEP meeting with CPSE to put together a mandate for her. Meanwhile, I have to get letters of necessity from our Pediatrician so we can get Amelia a nurse in school -- to keep her airways clear as she is at great risk for aspiration still and we just got out of the hospital 3 weeks ago, also to get her the maximum amount of therapies we can while she's in school and some after school. And I called our nursing agency to tell them. No idea what's going to happen with our nurses. One of our nurses, Keisha, is open to going to school with Amelia, but Lia, her other nurse -- I don't see it happening. She's been on jury duty since last week so I haven't even been able to speak to her about it. So much stuff to do in such a short amount of time. Can we actually get it all done?
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