Friday, December 28, 2007

A Little Nervous

Tomorrow, er, today I should say, as it is 1:30 in the morning. Anyway. I have representatives from two different programs coming to my home to assess Tommy tomorrow. At first I was really excited that we have potential help. I just don't know if it is going to be the right kind of help. Tommy is just falling through the cracks here. Until South Carolina gets its act together and a Medically Fragile waiver is signed into law, then we are just bobbing along hit and miss.

I still want them to come to our home because I want to hear what they have to say. I'm worried with the Medically Fragile program that transportation would be an issue. It has been suggested to me more than once to put my children back in public school. I'm not looking for the school to babysit my children. Look at all the germs they would be exposed to and potentially bringing those home to Tommy. Not to mention I'd have to send them to school in body armour. The school actually had an article in the paper at the beginning of the year advertising bullet proof backpacks!

The other program I don't know much about but I think I am going on a wild goose chase with them. I honestly am starting to feel like it's just easier to go it alone than to deal with the hassle of the different programs. Maybe I will be surprised, but I've been down this road before. In just 12 hours, I will be finishing up one meeting and preparing for the next.

If I won the lottery, I wouldn't have this problem. I'd have a housekeeper to tidy up and cook for the boys. I'd have a nanny to look after the boys when I had doctors appointments, and I would have a LIVE IN nurse that I pay privately to be my extra hands and eyes for Tommy. I'd actually have a room in my home just for homeschooling. No more cramped book shelves full of curriculum and reading on the couch. Hopes and dreams.....

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Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries