I have been making some good progress with social services. It took us over a week to straighten out our phone line problem (something was crossed in the wall, only giving out a busy signal. The phone company was going to charge us an arm and a leg to fix it, so my dad came and fixed it in a few minutes). I had to call all of the offices and social workers to make sure they had my cell phone number and e-mail.
- Social Security is in progress. The agent started off very rude, but as she began to hear all of Scarlett's medications, hospitalizations and issues, she softened and made sure we had everything set to be approved as soon as possible.
- The Medi-Cal (California state medical insurance) office was not a place I would want to spend much time, but the social worker there was very nice, and also promised to get things in motion as soon as possible.
- California Children's Services (CCS) had the gall to deny our claim last week; their reason: her medical records did not describe a neurological condition that qualified for services. Their doctor deemed her delays as minor and only related to being hospitalized so much; this without ever seeing her. After leaving messages on every voice mail I could access, I finally got a call back from a supervisor who explained they needed more documentation...so I have since inundated them with documentation. A letter from her doctor stating that "Scarlett has ongoing neurologic problems originating from a massive congenital brain tumor" and "it is clear that these are neurologic in origin and in fact she does meet all criteria"(ha!)...physical therapy, occupational therapy and speech evaluations...a chart of every single hospitalization and appointment she has had since diagnosis in December. After all of this, they are still requiring more, so we will continue to battle this.
- We finally were able to make an appointment for evaluation with the Early Start regional center...in August. I called them May 22. They can't see her until August because their doctor is on vacation. Apparently there is only one doctor to evaluate all the kids with developmental delays in our entire county of over 1 million residents...and I have a feeling this is not a doctor familiar with "massive congenital brain tumors".
- I have yet to hear back from the school district about hearing. From my experience, they have a limited amount of time to respond, so I think I will have to call and remind them of this.
Thank you to everyone who offered their experience and advice with this last week. I have learned a lot already, and will share some tips in a future post that I hope will help others in the future.
That's what I have accomplished this week, in addition to an additional surprise platelet transfusion for Scarlett, new hearing aids (more on that later!) and her first therapy appointments, as well as getting my flat tire fixed, wheels balanced and ordering a windshield repair (rocks on the freeway on the way to therapy). I feel like a telemarketer, making call after call to people who are not entirely happy to hear from me. However, I took a few minutes to make some homemade ice cream this afternoon, so I feel a little better - ice cream fixes most everything!
This week's request: does anyone have any information on hosting a blood drive? Say, in honor of a child with cancer who has has been transfused with more than her share? Email firstname.lastname@example.org if you know how we might go about doing this.