...

December 17, 2002

I know that feeling of waiting for the phone to ring, and every time it does you

answer with your heart in your throat. Gosh I wish there was an easier way of

life for you and that I lived close by to help you out. One day alone

with a seizing child is more than enough to make you crazy, and I know that you

have four kids and lots of issues to survive every day. The whole weekend must

have been tough.

I am thinking of you and pray that things will improve for Crystal and that life

will settle down for you.

Take care my friend

December 28, 2002

Hi Chris

Hannah was a cutie wasn't she? So many people commented on her hair and her

smile, the two biggest blessings if ever I saw any. The smile was such a gift to

all those who saw it.

I'm glad you liked the booklet. I prepared it in one day, and I believe that

everything in it was just " meant to be " . Hannah's sevice was such a joyful

tribute to her, people were even clapping to some of the songs we sang, and I

was almost dancing at one point. Even now as I recall it, I am amazed.

Hugs and kisses to Crystal, and I hope that the new year brings some welcome

news about her treatment. I'll be thinking about you on Jan 2nd. Take care

Chris.

love

----- Original Message -----

I was thinking of you & your family on Christmas. About a day or two

earlier, I recieved the package that you sent to me. Your Hannah was the

most darling child. What a face !!! I wish I had hair like that !!! Those

curls !!! I think that you did a beautiful job putting together that

memorial to her. I will keep that booklet & cherish it always. I hope that

the New Year brings in a time of healing & joy to your family.

We're here for you for as long as you might need us < smile > ....

December 28, 2002

Hi Chris

Hannah was a cutie wasn't she? So many people commented on her hair and her

smile, the two biggest blessings if ever I saw any. The smile was such a gift to

all those who saw it.

I'm glad you liked the booklet. I prepared it in one day, and I believe that

everything in it was just " meant to be " . Hannah's sevice was such a joyful

tribute to her, people were even clapping to some of the songs we sang, and I

was almost dancing at one point. Even now as I recall it, I am amazed.

Hugs and kisses to Crystal, and I hope that the new year brings some welcome

news about her treatment. I'll be thinking about you on Jan 2nd. Take care

Chris.

love

----- Original Message -----

I was thinking of you & your family on Christmas. About a day or two

earlier, I recieved the package that you sent to me. Your Hannah was the

most darling child. What a face !!! I wish I had hair like that !!! Those

curls !!! I think that you did a beautiful job putting together that

memorial to her. I will keep that booklet & cherish it always. I hope that

the New Year brings in a time of healing & joy to your family.

We're here for you for as long as you might need us < smile > ....

January 26, 2003

Dear Chris

Hoping that Crystal's seizures are improving, and that you are all able to get

at least a little rest. Thinking of you.

January 26, 2003

Dear Chris

Hoping that Crystal's seizures are improving, and that you are all able to get

at least a little rest. Thinking of you.

January 26, 2003

Dear Chris

Hoping that Crystal's seizures are improving, and that you are all able to get

at least a little rest. Thinking of you.

January 28, 2003

Is gabatril the new med, and when will the VNS be turned on?

Looks like things might be on the UP. Sure sope so!

Love

...

She is on a new med. I

hope it's going to be the one to help control her seizures. Between the

Gabatril & the Vagal Nerve Stimulator, I have my fingers crossed...

January 28, 2003

Is gabatril the new med, and when will the VNS be turned on?

Looks like things might be on the UP. Sure sope so!

Love

...

She is on a new med. I

hope it's going to be the one to help control her seizures. Between the

Gabatril & the Vagal Nerve Stimulator, I have my fingers crossed...

January 28, 2003

Is gabatril the new med, and when will the VNS be turned on?

Looks like things might be on the UP. Sure sope so!

Love

...

She is on a new med. I

hope it's going to be the one to help control her seizures. Between the

Gabatril & the Vagal Nerve Stimulator, I have my fingers crossed...

January 28, 2003

, its good to see that Crystal is improving, and enjoying some " normal

Crystal time " . Hoping that she improves day by day and that the VNS will be on

soon. Any pain at the site?

Take care

luv'hugs

(mum to angel Hannah, wings 13 weeks ago)

January 28, 2003

Great Chris. Here's to a great year, especially the next few weeks of changes,

and all good ones I hope,

Love

Yesterday, she didn't have too bad a day. She had her periods of spaciness,

but only one tonic seizure. I hope that continues as well. Less seizures,

more lucidness - that's our goal !!!!

January 28, 2003

Great Chris. Here's to a great year, especially the next few weeks of changes,

and all good ones I hope,

Love

Yesterday, she didn't have too bad a day. She had her periods of spaciness,

but only one tonic seizure. I hope that continues as well. Less seizures,

more lucidness - that's our goal !!!!

January 28, 2003

You are right, they just cant get it, because they have not experienced it the

same way as we have I suppose. The reality of their experience is so different.

I also feel guilty when I am too tired/ busy to listen.

The fire worry right where we live is not as great as in many areas of our

state. There have been lots of homes burned or threatened, but so far we have

been well away from them. But always have to be vigilant, especially as we are

not too far from a semi rural area, and just past that is a state forest. Water

restrictions mean that we can hand hose our gardens, so I am looking after

Hannah's rose garden with extra TLC every day. Got another rose bush given to me

yesterday to mark her birthday last Sunday. There are such thoughtful peolple in

this world who really uplift your spirits.

Take care and give miss C a smooch from me

----- Original Message -----

From: Chris

I love her dearly,

but I'm too weirded out to sit & listen to her tell me ( for the second

time ) about a dream that she had months ago. Is it me ??? Am I being unfair

??? I remember when I was a girl, feeling badly cause my mom wouldn't pay

any attention to me. Now I'm doing the same thing to my kids. The circle of

life, I guess < sigh > ...

It must be terrible, worrying about fire. Is winter your rainy season ??? I

hope your region gets plenty of rain, & soon

January 28, 2003

You are right, they just cant get it, because they have not experienced it the

same way as we have I suppose. The reality of their experience is so different.

I also feel guilty when I am too tired/ busy to listen.

The fire worry right where we live is not as great as in many areas of our

state. There have been lots of homes burned or threatened, but so far we have

been well away from them. But always have to be vigilant, especially as we are

not too far from a semi rural area, and just past that is a state forest. Water

restrictions mean that we can hand hose our gardens, so I am looking after

Hannah's rose garden with extra TLC every day. Got another rose bush given to me

yesterday to mark her birthday last Sunday. There are such thoughtful peolple in

this world who really uplift your spirits.

Take care and give miss C a smooch from me

----- Original Message -----

From: Chris

I love her dearly,

but I'm too weirded out to sit & listen to her tell me ( for the second

time ) about a dream that she had months ago. Is it me ??? Am I being unfair

??? I remember when I was a girl, feeling badly cause my mom wouldn't pay

any attention to me. Now I'm doing the same thing to my kids. The circle of

life, I guess < sigh > ...

It must be terrible, worrying about fire. Is winter your rainy season ??? I

hope your region gets plenty of rain, & soon

January 28, 2003

You are right, they just cant get it, because they have not experienced it the

same way as we have I suppose. The reality of their experience is so different.

I also feel guilty when I am too tired/ busy to listen.

The fire worry right where we live is not as great as in many areas of our

state. There have been lots of homes burned or threatened, but so far we have

been well away from them. But always have to be vigilant, especially as we are

not too far from a semi rural area, and just past that is a state forest. Water

restrictions mean that we can hand hose our gardens, so I am looking after

Hannah's rose garden with extra TLC every day. Got another rose bush given to me

yesterday to mark her birthday last Sunday. There are such thoughtful peolple in

this world who really uplift your spirits.

Take care and give miss C a smooch from me

----- Original Message -----

From: Chris

I love her dearly,

but I'm too weirded out to sit & listen to her tell me ( for the second

time ) about a dream that she had months ago. Is it me ??? Am I being unfair

??? I remember when I was a girl, feeling badly cause my mom wouldn't pay

any attention to me. Now I'm doing the same thing to my kids. The circle of

life, I guess < sigh > ...

It must be terrible, worrying about fire. Is winter your rainy season ??? I

hope your region gets plenty of rain, & soon

January 28, 2003

So glad to hear Crystal is getting better, it's just going to keep getting

better.

Take care and hang in there.

and Kennedy(3 1/2yrs.,pmg)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: ...

>Date: Tue, 28 Jan 2003 09:44:07 -0500

>

>Yep, gabatril is the new med. The VNS gets turned on 2/6... I can't wait...

>Yesterday, she didn't have too bad a dayShe had her periods of spaciness,

>but only one tonic seizure. I hope that continues as well. Less seizures,

>more lucidness - that's our goal !!!!

>

>Love yah...

>

>Chris

>

January 28, 2003

So glad to hear Crystal is getting better, it's just going to keep getting

better.

Take care and hang in there.

and Kennedy(3 1/2yrs.,pmg)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: ...

>Date: Tue, 28 Jan 2003 09:44:07 -0500

>

>Yep, gabatril is the new med. The VNS gets turned on 2/6... I can't wait...

>Yesterday, she didn't have too bad a dayShe had her periods of spaciness,

>but only one tonic seizure. I hope that continues as well. Less seizures,

>more lucidness - that's our goal !!!!

>

>Love yah...

>

>Chris

>

January 28, 2003

So glad to hear Crystal is getting better, it's just going to keep getting

better.

Take care and hang in there.

and Kennedy(3 1/2yrs.,pmg)

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: ...

>Date: Tue, 28 Jan 2003 09:44:07 -0500

>

>Yep, gabatril is the new med. The VNS gets turned on 2/6... I can't wait...

>Yesterday, she didn't have too bad a dayShe had her periods of spaciness,

>but only one tonic seizure. I hope that continues as well. Less seizures,

>more lucidness - that's our goal !!!!

>

>Love yah...

>

>Chris

>

January 28, 2003

- thanks hon...I so appreciate the support. How has Kennedy been

doing ??? Better I hope. Crystal had a mixed day today. Some pretty bad

periods of extreme spaciness with an inability to keep her head up. Then she

had some periods where she was running around & playing with her brothers.

She's had two tonic seizures today, the 1st worse then the second. I think

she might have had at least one more that I missed. When I checked on her

sitting in her wheelchair watching TV, she was very out of it. She's due to

be medicated soon & then it's bedtime for her. Because of her med schedule &

her seizures, she has her nights & days somewhat mixed up. She gets all

perky in the evening & is reluctant to settle down to go to sleep...Oh,

well. I'm just happy to see her being herself again. Right now she's

watching Charlie Brown in her bedroom. I can hear her " talking " to the TV...

It's just so hard getting her to sit down when she wants to walk around.

She'll walk around like she's drunk out of her mind, falling into everything

around her. She'll even fall down on her butt. STILL, she refuses to sit in

her wheelchair or her rifton chair. She is one stubborn kid !!!

Give the girls great big {{{ HUGS & KISSES }}} for us...

Lotsa luv to you all...

& little Princess, Crystal Aquielle....

January 28, 2003