WOW....I so exhausted Beckett....IEP...ESE etc....

October 31, 2006

Good lord.... I am so exhausted...seems to go in spurts.

From what I am reading, we should be ok with the Beckett

Waiver. We applied for and were denied SSI in 2004. ....that

means we should be able to get our bills paid all the way back to

where we started into ruins.

We do perform nearly all of our care here at

home....Infusions....schooling.....nebulzers etc. I would love

repite help!

So then, I am battling the school district over educating my

children and was told by them today that I have no rights to file

for " due process " because I homeschool. I said " I homeschool

because I was forced to last year when my children were signed up

for the district homebound program and we were failed " . I had to

get nasty and told them " I want to hear the state tell me that " we

will " not " We can't " or I will exercise my children's legal rights

to get an educating.

I am just at the point where I am so exhauted trying to be a

parent....a teacher......a nurse.....etc and I have to get help or I

will end up in the looney bin. I want, so badly, to hire someone

for two days to come to my home and help me get the paperwork jumble

done.

We are also on the crux of making a decision to go back to IVIG from

SCIG. Scig has become some an overwhelming fixture in our

life.....we are always thinking about and planning for our next

infusions. I fell like doggy poop because I am on way too low a

dose to accomodate the kids so they don't have to go to the

hospital. Our insurance is soooooooooooooooooo awesome (expensive

but awesome). they told me this morning " we cannot imagine what

your family is going through and we will support whatever decision

you make 100 percent. We want you to have anything you need. So we

are meeting with our hematologist here on Friday to discuss the

possibilty of starting IVIG at home instead of the hospital so I can

get my dose back up to where it needs to be for me to feel ok.

Anyway....ranting here. I have to get to a halloween party

Terri (mom and daughters PIDers)

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