Donovan

[Guest guest]

If we lived in the city, public transport would be an option. But we

actually live in a town so small up until recently it was titled a

" village " .

My kids go to a charter(very small) academy in the bigger city near to

us, and my greatest fear is if I cant drive them to and from school,

they will end up in the public school(and Im not knocking public

schools--just our local ones:)they have gone here all their lives, the

teachers and I are on first name basis, they are safe and loved and

quite advanced and are just doing so well, the thought of taking them

out makes me ill.

and in order to GET to where I could get ON the public transportation,

I would still need someone to drive me to that~!LOL we just live so

far out, nobody like that comes out this way.

I was almost seriously almost disappointed that I got my drs call

yesterday that I DONT have a pituitary tumor--how sick am I?--bc at

least that would have a name and a course of action--but now we are

just stuck out here in nowheresville until the next specialist and

those test results.

I havent not been able to drive myself since I was 15. Not to be

whiny, but its just such a loss of control to me. I dislike being

dependant.Im used to being the one in control.

Aside from that whininess, our infusion nurse just called to check on

the kids, and said the ID dr was going to call me as well. She said,

for at home, say, if Brennan were to have an allergic reaction to a

med, or something(he is the hives KING), benedryl in a small amount

would be ok. But they just realized in going over his charts that he

got a slightly larger dose yesterday(probably bc he grew a little) and

they recalled that over the summer he did do a similar thing(we put it

down to him having his head busted and needing stitches a couple days

before and just being upset). So, in short, they think it is the

benedryl and next time he probably wont get any at all, just get his

tylenol, and if he needs something for a reaction, will give him

something else. We are so so so so lucky for all the wonderful people

we have caring for and worrying over our kids---so so blessed. I know

I sound like an ungrateful brat--sometimes everything feels like Im

just in this alone--and then someone sweet calls, like our nurse,

taking time from her day to check up on my kids, when she is busy

enough and doesnt need to do that--it really means a lot to me. My

kids have wonderful drs and nurses, and I need to focus myself on all

the things that are going RIGHT.

valarie

[Guest guest]

You are so good to do that and I think it is a great idea. I would want to do

the same thing specially since you will be having all three of them on the

treatments.

Cassie

osdbmom <osdbmom@...> wrote:

well. We saw ID today and made the decision to start Donovan on IVIG

on Valentines day. I guess it still feels a little surreal. I know

this is the right thing.......we have to at least try......but I know

it will be hard on him....at 6.5......he just doesnt understand a lot

about this. Brennan, at 4.5, just accepts this is the way life is.

Savannah, 9, is old enough to understand her body and remember how

sick she was and know she is better now. But Donovan has never been

better, and I think just accepts the way he feels as normal. So its

kind of hard for him to understand. We are going to try for 4 months

and see how he does, and re-evaluate in June. we say that...but

honestly, that is how we started with Savannah and Brennan, and here

they are, almost a yr later and no plans to ever stop. so we'll see, I

guess.

I decided to do his infusion, for the first one, the week before the

other two kids. I did this bc I want to be able to sit with him and

not be torn in two other directions, especially if he has a reaction

or even just wants to sit in my lap, I want to be able to pay

attention just to him. We can do all 3 kids together the next month,

but the first time, I want to spend just with him.

valarie

www.marykay.com/cassieredinger