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Hi Dana,

What a struggle you've had and what a relief to know that things are

finally coming together!

I dont know about you as a grandma - how about an aunt? ;o)

Enjoy these times!! wendy, in canada

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HI Dana:

Thanks for the uplifting update. Sounds like you really have things in

place for a comprehensive recovery for Ava. She is one lucky girl and with

a baby to play with too. Take care, aloha, Kathy (H)

kathyh@...

At 05:36 PM 09/12/2000 -0400, you wrote:

>I can't remember if I posted about my conference last Friday with Ava's

>teachers. Sorry to repeat myself if I did! Anyway, I met with her core

>team and left with good feelings about the coming school year. They all

>seemed willing to be flexible in their thinking about Ava and her

> " quirks " .

>

>I took Ava to see a new psychiatrist today and I think this one will

>work out - finally! She is not in my insurance network but after the

>hassles I've had for the past year I decided to bite the bullet and pay

>the extra money. I let Ava listen to her CD with head phones in the car

>on the way over, knowing this would bring out her more driven behavior

>and sure enough it did. She was tapping out rhythms, listening to the

>songs playing in her head (w/o headphones now) rather than the doctor,

>changing the subject to what was on her agenda (like lyrics and such).

>It was perfect because it gave the doctor a good look at Ava's " on a

>mission " behavior. The doctor decided Ava is definitely

> " undermedicated " and we are upping her dose tomorrow.

>

>So finally, after a very difficult year, I've got the school's attention

>and the teacher's I want, a psychologist for parenting consultant work

>with Ava's Dad, a CBT specialist to consult with on a regular basis just

>in case Ava ever decides to actually do some CBT and now a doctor to

>supervise meds.

>

>So things are looking up, I hope. One thing that has happened and is

>an unexpected treat is that I have been caring for a friend's one year

>old every other weekend. It's a long story but basically, the mom is

>struggling and she just got out of treatment for addiction. While she

>is getting her life back together the grandma took custody. I told the

>grandma I'd take the baby every other weekend if she would do this for

>the mom. The unexpected treat part is the way Ava has taken to this boy

>and how much fun we have together. We took him to the museum, the park,

>downtown for a walk. Ava is in such good spirits and is so good with

>babies that it improves our time together too. She forgets to argue

>with me! What a bonus! Everybody is winning in this arrangement. And

>this is one cute, amazing baby........the cuddliest.......the

>smartest........the most adorable.....don't get me started. I was born

>to be a grandma.

>

>Dana in NC

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HI Dana:

Thanks for the uplifting update. Sounds like you really have things in

place for a comprehensive recovery for Ava. She is one lucky girl and with

a baby to play with too. Take care, aloha, Kathy (H)

kathyh@...

At 05:36 PM 09/12/2000 -0400, you wrote:

>I can't remember if I posted about my conference last Friday with Ava's

>teachers. Sorry to repeat myself if I did! Anyway, I met with her core

>team and left with good feelings about the coming school year. They all

>seemed willing to be flexible in their thinking about Ava and her

> " quirks " .

>

>I took Ava to see a new psychiatrist today and I think this one will

>work out - finally! She is not in my insurance network but after the

>hassles I've had for the past year I decided to bite the bullet and pay

>the extra money. I let Ava listen to her CD with head phones in the car

>on the way over, knowing this would bring out her more driven behavior

>and sure enough it did. She was tapping out rhythms, listening to the

>songs playing in her head (w/o headphones now) rather than the doctor,

>changing the subject to what was on her agenda (like lyrics and such).

>It was perfect because it gave the doctor a good look at Ava's " on a

>mission " behavior. The doctor decided Ava is definitely

> " undermedicated " and we are upping her dose tomorrow.

>

>So finally, after a very difficult year, I've got the school's attention

>and the teacher's I want, a psychologist for parenting consultant work

>with Ava's Dad, a CBT specialist to consult with on a regular basis just

>in case Ava ever decides to actually do some CBT and now a doctor to

>supervise meds.

>

>So things are looking up, I hope. One thing that has happened and is

>an unexpected treat is that I have been caring for a friend's one year

>old every other weekend. It's a long story but basically, the mom is

>struggling and she just got out of treatment for addiction. While she

>is getting her life back together the grandma took custody. I told the

>grandma I'd take the baby every other weekend if she would do this for

>the mom. The unexpected treat part is the way Ava has taken to this boy

>and how much fun we have together. We took him to the museum, the park,

>downtown for a walk. Ava is in such good spirits and is so good with

>babies that it improves our time together too. She forgets to argue

>with me! What a bonus! Everybody is winning in this arrangement. And

>this is one cute, amazing baby........the cuddliest.......the

>smartest........the most adorable.....don't get me started. I was born

>to be a grandma.

>

>Dana in NC

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  • 1 year later...

Hi Stacey,

That's great about the remicade. Hopefully you will see results like

Carol did.

I'll send some positive thoughts your way.

Hugs,

Al

> Hi All

> I got a call from my rheumy today. I am scheduled for my first

remicade

> infusion on Tuesday at 9:30. Can't wait. I hope this will give me

some

> relief. Right now, I never know from one day to the next if I will

be able

> to walk. Had my tb test yesterday along with labs. When the tech

went to

> stick me for the labs, blood squirted out and made a bit of a

mess. Not too

> bad though. That never happened with me before, although I have

seen it

> happen when I have tried to draw blood on a patient. I do have

some updates

> for you guys, but I'll write another post in a couple of minutes.

Happy,

> happy, happy. (for now anyway) :-)

> Love and Hugs

> Stacey in PA

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  • 6 years later...

I'm so very pleased to have been told about this group.....growing up

with BPES was so hard and I really wish there had been more support for

me but now at least with groups like this our children can have that

support and who knows maybe even some good friends with the same

condition....

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