Re: Re: Sally, Miracle encounter

[Guest guest]

Now Kim that sounds like a great day for you!

Kay

She who laughs.... LASTS

Re: Sally, Miracle encounter

> With all of this talk this week you all might appreciate the story of our

> " miracle encounter " with Dylan yesterday.

>

> As you might guess getting Dylan to engage in reciprocal games or

> interactions is work for him, something we help him do, not something he

> does on his own.

>

> He loves to play with his ball, he rolls it up the hill and it rolls back

> down and hits him or we roll it at him. He laughs and thinks it is great

> fun. When we play catch he catches it and then throws it away from us.

>

> Yesterday I tried to engage him in playing catch and he did it. He played

> catch with me for 10 minutes straight. He was sitting up, looking right

at

> me, and throwing it right at me, then actively catching the ball. When he

> got tired, he lay down, but still continued in the game. We then added

his

> sister in to see if he would play ball with both of us. He immediately

> caught on to the pattern of us throwing it around the circle. He was even

> able to handle changing the direction of who threw to who. I think we

were

> able to play for 45 minutes.

>

> These moments of engagement are such treasures. Such thanksgiving for the

> moment!

>

> Kim

> Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15

>

>

>

>

>

> > Kim and -

> >

> > " I will never stop trying to get her back. "

> >

> > THANK YOU FOR YOUR DETERMINATION, PERSEVERENCE and STAMINA in searching

for

> > the keys to Dylan and Kendra's(and other CHARGE kids) " mysteries " . You

are

> > bigger than life in my book. Dylan and Kendra are lucky kids to have

you

> > guys as moms. Many of us would have given up by now.....you two are

> > heroes! Hang in there!

> > Hugs, sally (mom to , 21)

> >

> > P.S. Happy Mothers Day a bit early to all the great Moms on this list.

> >

> >

> >

[Guest guest]

Oh, what a wonderful story! And a great glimpse for us into what it is like to

be in your shoes. This is the same feeling I have sometimes watching Aubrie eat

and thinking about what it took to get her there. And her struggles were

minimal compared to what others have gone through.

Michele W

Re: Sally, Miracle encounter

With all of this talk this week you all might appreciate the story of our

" miracle encounter " with Dylan yesterday.

As you might guess getting Dylan to engage in reciprocal games or

interactions is work for him, something we help him do, not something he

does on his own.

He loves to play with his ball, he rolls it up the hill and it rolls back

down and hits him or we roll it at him. He laughs and thinks it is great

fun. When we play catch he catches it and then throws it away from us.

Yesterday I tried to engage him in playing catch and he did it. He played

catch with me for 10 minutes straight. He was sitting up, looking right at

me, and throwing it right at me, then actively catching the ball. When he

got tired, he lay down, but still continued in the game. We then added his

sister in to see if he would play ball with both of us. He immediately

caught on to the pattern of us throwing it around the circle. He was even

able to handle changing the direction of who threw to who. I think we were

able to play for 45 minutes.

These moments of engagement are such treasures. Such thanksgiving for the

moment!

Kim

Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15

> Kim and -

>

> " I will never stop trying to get her back. "

>

> THANK YOU FOR YOUR DETERMINATION, PERSEVERENCE and STAMINA in searching for

> the keys to Dylan and Kendra's(and other CHARGE kids) " mysteries " . You are

> bigger than life in my book. Dylan and Kendra are lucky kids to have you

> guys as moms. Many of us would have given up by now.....you two are

> heroes! Hang in there!

> Hugs, sally (mom to , 21)

>

> P.S. Happy Mothers Day a bit early to all the great Moms on this list.

>

>

>

[Guest guest]

how wonderful for you and Dylan.

maria

Re: Sally, Miracle encounter

> With all of this talk this week you all might appreciate the story of our

> " miracle encounter " with Dylan yesterday.

>

> As you might guess getting Dylan to engage in reciprocal games or

> interactions is work for him, something we help him do, not something he

> does on his own.

>

> He loves to play with his ball, he rolls it up the hill and it rolls back

> down and hits him or we roll it at him. He laughs and thinks it is great

> fun. When we play catch he catches it and then throws it away from us.

>

> Yesterday I tried to engage him in playing catch and he did it. He played

> catch with me for 10 minutes straight. He was sitting up, looking right

at

> me, and throwing it right at me, then actively catching the ball. When he

> got tired, he lay down, but still continued in the game. We then added

his

> sister in to see if he would play ball with both of us. He immediately

> caught on to the pattern of us throwing it around the circle. He was even

> able to handle changing the direction of who threw to who. I think we

were

> able to play for 45 minutes.

>

> These moments of engagement are such treasures. Such thanksgiving for the

> moment!

>

> Kim

> Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15

>

>

>

>

>

> > Kim and -

> >

> > " I will never stop trying to get her back. "

> >

> > THANK YOU FOR YOUR DETERMINATION, PERSEVERENCE and STAMINA in searching

for

> > the keys to Dylan and Kendra's(and other CHARGE kids) " mysteries " . You

are

> > bigger than life in my book. Dylan and Kendra are lucky kids to have

you

> > guys as moms. Many of us would have given up by now.....you two are

> > heroes! Hang in there!

> > Hugs, sally (mom to , 21)

> >

> > P.S. Happy Mothers Day a bit early to all the great Moms on this list.

> >

> >

> >

[Guest guest]

Kim,

What a great and wonderful moment (or 45 of them!) for you all. It's so great

to hear these positive stories.

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Sally, Miracle encounter

With all of this talk this week you all might appreciate the story of our

" miracle encounter " with Dylan yesterday.

As you might guess getting Dylan to engage in reciprocal games or

interactions is work for him, something we help him do, not something he

does on his own.

He loves to play with his ball, he rolls it up the hill and it rolls back

down and hits him or we roll it at him. He laughs and thinks it is great

fun. When we play catch he catches it and then throws it away from us.

Yesterday I tried to engage him in playing catch and he did it. He played

catch with me for 10 minutes straight. He was sitting up, looking right at

me, and throwing it right at me, then actively catching the ball. When he

got tired, he lay down, but still continued in the game. We then added his

sister in to see if he would play ball with both of us. He immediately

caught on to the pattern of us throwing it around the circle. He was even

able to handle changing the direction of who threw to who. I think we were

able to play for 45 minutes.

These moments of engagement are such treasures. Such thanksgiving for the

moment!

Kim

Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15

> Kim and -

>

> " I will never stop trying to get her back. "

>

> THANK YOU FOR YOUR DETERMINATION, PERSEVERENCE and STAMINA in searching for

> the keys to Dylan and Kendra's(and other CHARGE kids) " mysteries " . You are

> bigger than life in my book. Dylan and Kendra are lucky kids to have you

> guys as moms. Many of us would have given up by now.....you two are

> heroes! Hang in there!

> Hugs, sally (mom to , 21)

>

> P.S. Happy Mothers Day a bit early to all the great Moms on this list.

>

>

>

[Guest guest]

Kim,

Thanks for sharing such a wonderful story! I've been reading your posts with

much concern. Being a first time mother with a child that has CHARGE, I

grieve hearing what some families face daily. We with younger affected do

need to hear 'this side of the story' as difficult as it is. I thank you and

(others too) for being so truthful, as we also don't know what the

future holds for ...

We recently had a 'first experience' -- has never been a big cuddle

bug. When she was little we had few positions that felt right for holding

her, i.e., holding her upright diminished reflux, but unfortunately then her

tongue fell back and obstructed her airway. We needed to bond in many other

ways. About two weeks ago (during Survivor) held my hand for 40 min. as

we laid next to each other watching the show. She had never held my hand

before, and now asks to hold them every time I lay next to her : )

Sending strength and support,

Jan H. Mom to (2 1/2 CHa?RGE)

[Guest guest]

HI Jan,

Yes we do appreciate the simple things!!!! It concerns me sometimes that

these posts must sound horrifying to parents of younger children, when the

reality is we are a very happy family and we think Dylan is awesome.

Best of luck with and enjoy those hand holdings.

Kim

>

> Kim,

>

> Thanks for sharing such a wonderful story! I've been reading your posts with

> much concern. Being a first time mother with a child that has CHARGE, I

> grieve hearing what some families face daily. We with younger affected do

> need to hear 'this side of the story' as difficult as it is. I thank you and

> (others too) for being so truthful, as we also don't know what the

> future holds for ...

>

> We recently had a 'first experience' -- has never been a big cuddle

> bug. When she was little we had few positions that felt right for holding

> her, i.e., holding her upright diminished reflux, but unfortunately then her

> tongue fell back and obstructed her airway. We needed to bond in many other

> ways. About two weeks ago (during Survivor) held my hand for 40 min. as

> we laid next to each other watching the show. She had never held my hand

> before, and now asks to hold them every time I lay next to her : )

>

> Sending strength and support,

> Jan H. Mom to (2 1/2 CHa?RGE)

>

>

>

[Guest guest]

One never expects eating to be such a big deal, but with our kid's

experiences we know that it is a great gift. Kim

> Oh, what a wonderful story! And a great glimpse for us into what it is like

> to be in your shoes. This is the same feeling I have sometimes watching

> Aubrie eat and thinking about what it took to get her there. And her

> struggles were minimal compared to what others have gone through.

>

> Michele W

> Re: Sally, Miracle encounter

>

>

> With all of this talk this week you all might appreciate the story of our

> " miracle encounter " with Dylan yesterday.

>

> As you might guess getting Dylan to engage in reciprocal games or

> interactions is work for him, something we help him do, not something he

> does on his own.

>

> He loves to play with his ball, he rolls it up the hill and it rolls back

> down and hits him or we roll it at him. He laughs and thinks it is great

> fun. When we play catch he catches it and then throws it away from us.

>

> Yesterday I tried to engage him in playing catch and he did it. He played

> catch with me for 10 minutes straight. He was sitting up, looking right at

> me, and throwing it right at me, then actively catching the ball. When he

> got tired, he lay down, but still continued in the game. We then added his

> sister in to see if he would play ball with both of us. He immediately

> caught on to the pattern of us throwing it around the circle. He was even

> able to handle changing the direction of who threw to who. I think we were

> able to play for 45 minutes.

>

> These moments of engagement are such treasures. Such thanksgiving for the

> moment!

>

> Kim

> Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15

>

>

>

>

>

>> Kim and -

>>

>> " I will never stop trying to get her back. "

>>

>> THANK YOU FOR YOUR DETERMINATION, PERSEVERENCE and STAMINA in searching for

>> the keys to Dylan and Kendra's(and other CHARGE kids) " mysteries " . You are

>> bigger than life in my book. Dylan and Kendra are lucky kids to have you

>> guys as moms. Many of us would have given up by now.....you two are

>> heroes! Hang in there!

>> Hugs, sally (mom to , 21)

>>

>> P.S. Happy Mothers Day a bit early to all the great Moms on this list.

>>

>>

>>

[Guest guest]

how sweet is that!!! all three of mine are huggers and cuddlers--sometimes

too much with timmy, so I guess maybe it goes to the other extreme too. I'm

so happy you get your cuddle time now.

Re: Re: Sally, Miracle encounter

>

> Kim,

>

> Thanks for sharing such a wonderful story! I've been reading your posts

with

> much concern. Being a first time mother with a child that has CHARGE, I

> grieve hearing what some families face daily. We with younger affected do

> need to hear 'this side of the story' as difficult as it is. I thank you

and

> (others too) for being so truthful, as we also don't know what the

> future holds for ...

>

> We recently had a 'first experience' -- has never been a big cuddle

> bug. When she was little we had few positions that felt right for holding

> her, i.e., holding her upright diminished reflux, but unfortunately then

her

> tongue fell back and obstructed her airway. We needed to bond in many

other

> ways. About two weeks ago (during Survivor) held my hand for 40 min.

as

> we laid next to each other watching the show. She had never held my hand

> before, and now asks to hold them every time I lay next to her : )

>

> Sending strength and support,

> Jan H. Mom to (2 1/2 CHa?RGE)

>

>

>