We found out on Monday that we had a hearing today to try and get some State services for Molly. The letter somehow got misfiled here and so I didn't have a lot of time to organize us for the meeting. I got Molly's PT to write a letter, the pediatrician to write a letter and then I went and had a bunch of photos printed of her medical related experiences. I then went to Staples and made copies of everything in her file folder that I thought might help our case. Yesterday we went to the pediatrician to pick up the letter and show off Molly's new potty tricks.
Today was the hearing and I didn't know what to expect. We had been told this meeting probably wouldn't happen for a year or so, so I was not at all prepared when I found out on Monday. There were two women there who made the decision to deny Molly CAP/C services, the court appointed person running the hearing and a nurse that had come to the house back in June to do the in-home evaluation. They read through a bunch of pages filled with all of the reasons they felt that Molly didn't qualify for services. CAP/C is a program for Medically Fragile children, something I would have thought Molly was the poster-child for. In their terms it means a child that either has a need for continuous nursing care or who requires care that is not "age appropriate". The women who made the initial decision were like the "ice queens" and showed no compassion or interest in learning more about Molly, which made it difficult to stay composed.
I felt like the final decision had already made and it didn't matter what I said. We will hear in the next 60 days what the official decision is and then we can appeal that decision or apply for another in-home evaluation and start the process all over again. It is hard not to think about what our lives would be like if there was someone here on a weekly/daily basis to give me help with Molly. That person would also offer 20+ hours a month of respite care, which would allow Jim and I to go out by ourselves on a regular basis.
Once the hearing was over we headed to the pediatrician's office to get a weight for Molly's Pamidronate infusion on Saturday.
The toilet training has been a challenge and we have had almost an equal share of on the potty and in the pant experiences. All but one of the poops have been on the potty, which is a HUGE accomplishment!! We are sticking with it and hoping it will get better soon. Right now she generally says she does not have to go and some of the time is happy to go on the potty anyway and other times is rather resistant. We are making progress and I think that is all we can expect at this point.
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