Tag Archives: Lupus

I now pronounce sentence. 72 hours and a prayer

The appeal to Medicaid to further fund services has been denied. As a result, I will be picking up David from the facility on Monday.  We then come home to begin a new chapter in our lives as a family. We had an IEP meeting for him this morning. Short term he will be homebound working on school materials supplied by the district. Long term we are applying to a day program for him. During the IEP meeting we got a look into the life of David. Minimum five hours a week of intensive group therapy. Weekly individual therapy. Weekly family therapy. He is in a self-contained classroom for all but two classes. Those two classes are Art and Physical Education. His therapist makes regularly daily contact throughout each day to ensure that David knows she is checking on how he is doing. He has 24×7 staff support of some

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Annual Christmas Letter and Appeal

Greetings friends and readers. It is with all the joy in my heart that I wish each of you a joyful holiday.  One filled with acceptance of the differences we see in others.  One where our children know how much love we feel in our hearts for them. It is tradition in our home to open gifts Christmas Eve at home, and then on Christmas Day with the cousins and Santa.  Tonight, I reflected on Christmas’s past. I remember a Christmas when we got K one of those play kitchens.  It took me most of the night to put the thing together, but the joy on her face when she saw it was worth every slip of the screwdriver. To when Teletubbies were the rage and we got C the purple one.  (After all this time, still not sure of the names on them even after 17 years.) To the

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Off Close Watch

David is off close watch. They moved him off the lower level of the residence, and to the main floor.  This allows them to keep a closer eye on him. I miss the little guy. I advised staff that we need to ensure that we are looking at his meds.  While not a cure, they do help him.  But they can only help if they are appropriately used, up to and including changing his prescriptions.  Other than minor adjustments, David hasn’t undergone a full scale med wash in almost a year.  Whereas before his current placement he underwent a med wash about every 6 to 8 weeks. I hope that they hear me. Tweet #fighting4answrs