Re: need cheering up ideas DAYNA

[Guest guest]

--

Dayna!! we are about to die of excitement over here, I can tell you

that much!!

All the kids are so excited. They put Savannah thru as a rush wish, in

light of her anxiety/emotional stuff lately, and we get to go in May.

My parents are able to come with us, too, so we'll have one adult per

kid--woohoo!! Thinking about her trip is the ONLY thing that makes

Savannah even start to crack a smile anymore.

Her wish was to meet cinderella. they are going to try to arrange for

a meal with the princesses. Went to the MAW office on Monday and they

were so nice, let her pick things out of the magic closet, etc and she

had fun. She is WAY excited about the limo ride.

I have one question, I dont know if you might know the answer to.

Savannah is allergic to milk and egg, and Brennan to milk. The MAW

office said they would let them know, but werent sure if they would

provide special food or not? but then, they tell us that the fridge

will be stocked, and we eat at GKTW for breakfast and dinner.....what

do we do if there isnt anything the kids can eat? and the ice cream

shop....she keeps asking me if they sell Rice Dream Ice Cream there:)

and the princess meal......she'll be so bummed if she cant eat with them.

do you happen to know?

thanks,

valarie

- In , " Dayna S Fladhammer " <dfladhammer@...> wrote:

>

> ,

>

>

>

> We went to GKTW!!! It was awesome! In fact, we liked it so much

that when

> Kate gets her wish, she says she wants to go there (not to Disney, not

> Universal, just Give Kids The World!)

>

>

>

> Let me know if I can help at all. I have some cool pictures and

such! You

> will have SUCH an amazing time there!

>

>

>

> Dayna

>

>

>

> _____

>

> From: [mailto: ] On

Behalf Of

> osdbmom

> Sent: Wednesday, March 21, 2007 9:58 AM

>

> Subject: Re: need cheering up ideas

>

>

>

> --

>

> Hi!

> Im so sorry your little girl is struggling. It hurts the mommy heart,

> doesnt it? My 9 yr old with CVID has been struggling with anxiety and

> depression for a couple months now, and I can honestly say, this

> emotional stuff is WAY harder than the physical stuff, to me. I feel

> like, with asthma, or with infections, I have a game plan, a " mode " I

> can go into, I know what to do, who to call, etc. But this stuff? I

> feel like Im floundering, trying this and that, trying to help and

> half the time failing.

> Ive been trying to give something to look forward to. We hadnt had

> much success with this, until the Make a Wish call came in last week.

> After they called and told Savannah her trip was coming, and soon,

> we've seen a little sparkle back in her eye we havent seen in some

> time. Even though its a couple months away, having something to look

> forward too is giving her a little bit of hope. When she is very

> down, we talk about things we might do at Disney, what the GKTW place

> might be like, or even look up pics on the internet. Its something she

> can focus on. Im trying to find some activity for her to do--something

> that wont cause her more illness/sicknesses, but something she can

> think about. Most of the time I cant get her to call friends on the

> phone. BUT, my best friend has a little baby that REALLY cheers her

> up. If she is not contagious, might you know someone with a baby?

> Something about a baby is so healing!! Its hard to feel down when you

> are watching a baby watching you, or making little gurgles. Playing

> with my friends baby really cheers her up for a while. She wont play

> anymore. None of her toys, books, or games hold any interest for her

> anymore:(

> Will she do crafts? learn a skill, like sewing? Rose Art has a lot of

> little,inexpensive craft sets.

> Im trying to think of something that she might be able to do that

> might help other kids.

> Will she write? short stories? bake with you? I know its hard when the

> weather is cold. Sometimes I feel like if I could just get Savannah

> out in the sun, or go sit at the lake, life would feel better to

> her--but stuck in the house, with snow and rain and wind, just that in

> itself is depressing.

> I hope she is doing better.

>

> valarie

>

> - In groups (DOT) <mailto:%40> com, Dale

> Weatherford <dale@> wrote:

> >

> > plant4birds wrote:

> > >

> > >

> > > Hi! This is Betty, mom to Laurel and Ian, both with PID. Laurel

> > > (10)

> >

> >

> > Betty, I'm glad we can encourage you while you are stuck inside with

> two

> > PID-ers!

> >

> > They key to this may be that she's 10. There's something about that

> age

> > that struck me. I know that most kids between 10 and 12 become

> aware of

> > their mortality in a new way. Some become downright maudlin.

> >

> > When cheering up didn't work with my daughter (when she was age

11-13),

> > it usually meant that something was troubling her deep inside that

she

> > needed to talk about. I've never used the art therapy that Dayna

> > recommended, but we did a lot of backrubs from Mom and giving her

> > permission to talk about how she's really feeling deep down inside.

> > Now, that's not fun to hear as a Mom. It was scary to hear that Katy

> > felt like she was dying and the doctors didn't care and her friends

> > didn't care and her parents didn't care, etc, etc, etc. But, by

> > listening, I was able to answer her questions and point out some

errors

> > in her thinking. Kids won't tell their parents their real thoughts if

> > they are afraid that you can't handle her thoughts -- so it's

important

> > that you tell her ahead of time -- if you have questions that I don't

> > know the answers to -- we'll work on them together and I'll help you

> > find out. I would tell her: " when I'm worried about something and I

> > just need to talk, I talk to your Daddy and sometimes we don't

come up

> > with answers, we just cry together. I want you to know that if you

> need

> > to cry, I'll cry with you. " Once Katy got into this mood, no amount

> > of cheering her up would work -- but coming alongside her and " being

> > there " for her, did. Now, my best friend has a child that if you

> pull

> > up a stool and cry with her - you'll be crying for the rest of your

> > life! That child doesn't need a caring ear -- she needs someone to

> > distract her from her pain. What I'm saying is that you know best how

> > to deal with your daughter and God will show you how to meet her

needs.

> >

> > At ten, I was teaching Katy how to sew by hand and she made stuffed

> toys

> > and then clothes for all her animals. They weren't fancy or

well-made,

> > but she loved designing clothes and still does. Several ladies in the

> > church kept her supplied with scraps of material and trim stuff.

> >

> > Also, have you looked into " books on tape " at your local library. My

> > kids liked those for special treats.

> >

> > Also, have you taught her how to crochet. Katy and both

enjoyed

> > learning that.

> >

> > And my all time favorite is play dough. I've got a recipe if you

> want it.

> >

> > Oh, are your kiddos on IVIG?

> >

> > Hope some of this helps,

> > In His service,

> > dale

> >

>

>

>

>

>

>

[Guest guest]

- Hi

We went to GTKTW last August Meghan's wish was with the Make aWish of MN

She got to have time alone with Mickey Mouse. You don't have to worry about

food

at GKTW they have a ice cream palor with ice cream/pop al trimmings on ice

cream

in evenings free pizza by the pool. Breakfast and Supper in the little area

that was by

the pool Meghan (5) is still talking about Mickey Mouse and the Princess's we

spent a

alot of time in toon town and didn't go on mayn of the rides due to some that

wouldnt

be good for her heart but there was so many shows got to see Beauty and the

Beast Live and

Lion King those are amoung the best!!! There was alot to do in Animal Kingdom

too. The Jeep ride was fun

also. But don't worry about food. They also have pop and sandwiches waiting

in fridge for when you get there.

We were in house 150. Right by the pool on the last day we spent the whole

day relaxing by the pool.

It's soooo much fun. Lots to do in the evenings at GTKTW. You'll have a

blast. Bring lots of sunscreen!!!

Meghan got a little red but the was it. They have extra tickets there for

different shows we took her to the

Kenedy Space Center shich she also enjoyed. There's so much stuff to do and

before you kow it's time to go home.

osdbmom <osdbmom@...> wrote:

--

Dayna!! we are about to die of excitement over here, I can tell you

that much!!

All the kids are so excited. They put Savannah thru as a rush wish, in

light of her anxiety/emotional stuff lately, and we get to go in May.

My parents are able to come with us, too, so we'll have one adult per

kid--woohoo!! Thinking about her trip is the ONLY thing that makes

Savannah even start to crack a smile anymore.

Her wish was to meet cinderella. they are going to try to arrange for

a meal with the princesses. Went to the MAW office on Monday and they

were so nice, let her pick things out of the magic closet, etc and she

had fun. She is WAY excited about the limo ride.

I have one question, I dont know if you might know the answer to.

Savannah is allergic to milk and egg, and Brennan to milk. The MAW

office said they would let them know, but werent sure if they would

provide special food or not? but then, they tell us that the fridge

will be stocked, and we eat at GKTW for breakfast and dinner.....what

do we do if there isnt anything the kids can eat? and the ice cream

shop....she keeps asking me if they sell Rice Dream Ice Cream there:)

and the princess meal......she'll be so bummed if she cant eat with them.

do you happen to know?

thanks,

valarie

- In , " Dayna S Fladhammer " <dfladhammer@...> wrote:

>

> ,

>

>

>

> We went to GKTW!!! It was awesome! In fact, we liked it so much

that when

> Kate gets her wish, she says she wants to go there (not to Disney, not

> Universal, just Give Kids The World!)

>

>

>

> Let me know if I can help at all. I have some cool pictures and

such! You

> will have SUCH an amazing time there!

>

>

>

> Dayna

>

>

>

> _____

>

> From: [mailto: ] On

Behalf Of

> osdbmom

> Sent: Wednesday, March 21, 2007 9:58 AM

>

> Subject: Re: need cheering up ideas

>

>

>

> --

>

> Hi!

> Im so sorry your little girl is struggling. It hurts the mommy heart,

> doesnt it? My 9 yr old with CVID has been struggling with anxiety and

> depression for a couple months now, and I can honestly say, this

> emotional stuff is WAY harder than the physical stuff, to me. I feel

> like, with asthma, or with infections, I have a game plan, a " mode " I

> can go into, I know what to do, who to call, etc. But this stuff? I

> feel like Im floundering, trying this and that, trying to help and

> half the time failing.

> Ive been trying to give something to look forward to. We hadnt had

> much success with this, until the Make a Wish call came in last week.

> After they called and told Savannah her trip was coming, and soon,

> we've seen a little sparkle back in her eye we havent seen in some

> time. Even though its a couple months away, having something to look

> forward too is giving her a little bit of hope. When she is very

> down, we talk about things we might do at Disney, what the GKTW place

> might be like, or even look up pics on the internet. Its something she

> can focus on. Im trying to find some activity for her to do--something

> that wont cause her more illness/sicknesses, but something she can

> think about. Most of the time I cant get her to call friends on the

> phone. BUT, my best friend has a little baby that REALLY cheers her

> up. If she is not contagious, might you know someone with a baby?

> Something about a baby is so healing!! Its hard to feel down when you

> are watching a baby watching you, or making little gurgles. Playing

> with my friends baby really cheers her up for a while. She wont play

> anymore. None of her toys, books, or games hold any interest for her

> anymore:(

> Will she do crafts? learn a skill, like sewing? Rose Art has a lot of

> little,inexpensive craft sets.

> Im trying to think of something that she might be able to do that

> might help other kids.

> Will she write? short stories? bake with you? I know its hard when the

> weather is cold. Sometimes I feel like if I could just get Savannah

> out in the sun, or go sit at the lake, life would feel better to

> her--but stuck in the house, with snow and rain and wind, just that in

> itself is depressing.

> I hope she is doing better.

>

> valarie

>

> - In groups (DOT) <mailto:%40> com, Dale

> Weatherford <dale@> wrote:

> >

> > plant4birds wrote:

> > >

> > >

> > > Hi! This is Betty, mom to Laurel and Ian, both with PID. Laurel

> > > (10)

> >

> >

> > Betty, I'm glad we can encourage you while you are stuck inside with

> two

> > PID-ers!

> >

> > They key to this may be that she's 10. There's something about that

> age

> > that struck me. I know that most kids between 10 and 12 become

> aware of

> > their mortality in a new way. Some become downright maudlin.

> >

> > When cheering up didn't work with my daughter (when she was age

11-13),

> > it usually meant that something was troubling her deep inside that

she

> > needed to talk about. I've never used the art therapy that Dayna

> > recommended, but we did a lot of backrubs from Mom and giving her

> > permission to talk about how she's really feeling deep down inside.

> > Now, that's not fun to hear as a Mom. It was scary to hear that Katy

> > felt like she was dying and the doctors didn't care and her friends

> > didn't care and her parents didn't care, etc, etc, etc. But, by

> > listening, I was able to answer her questions and point out some

errors

> > in her thinking. Kids won't tell their parents their real thoughts if

> > they are afraid that you can't handle her thoughts -- so it's

important

> > that you tell her ahead of time -- if you have questions that I don't

> > know the answers to -- we'll work on them together and I'll help you

> > find out. I would tell her: " when I'm worried about something and I

> > just need to talk, I talk to your Daddy and sometimes we don't

come up

> > with answers, we just cry together. I want you to know that if you

> need

> > to cry, I'll cry with you. " Once Katy got into this mood, no amount

> > of cheering her up would work -- but coming alongside her and " being

> > there " for her, did. Now, my best friend has a child that if you

> pull

> > up a stool and cry with her - you'll be crying for the rest of your

> > life! That child doesn't need a caring ear -- she needs someone to

> > distract her from her pain. What I'm saying is that you know best how

> > to deal with your daughter and God will show you how to meet her

needs.

> >

> > At ten, I was teaching Katy how to sew by hand and she made stuffed

> toys

> > and then clothes for all her animals. They weren't fancy or

well-made,

> > but she loved designing clothes and still does. Several ladies in the

> > church kept her supplied with scraps of material and trim stuff.

> >

> > Also, have you looked into " books on tape " at your local library. My

> > kids liked those for special treats.

> >

> > Also, have you taught her how to crochet. Katy and both

enjoyed

> > learning that.

> >

> > And my all time favorite is play dough. I've got a recipe if you

> want it.

> >

> > Oh, are your kiddos on IVIG?

> >

> > Hope some of this helps,

> > In His service,

> > dale

> >

>

>

>

>

>

>

[Guest guest]

---

Do you know if they provide food for children with food allergies?

valarie

In , Wellnitz <wellnitzlisa@...> wrote:

>

> - Hi

> We went to GTKTW last August Meghan's wish was with the Make aWish

of MN

> She got to have time alone with Mickey Mouse. You don't have to

worry about food

> at GKTW they have a ice cream palor with ice cream/pop al

trimmings on ice cream

> in evenings free pizza by the pool. Breakfast and Supper in the

little area that was by

> the pool Meghan (5) is still talking about Mickey Mouse and the

Princess's we spent a

> alot of time in toon town and didn't go on mayn of the rides due

to some that wouldnt

> be good for her heart but there was so many shows got to see

Beauty and the Beast Live and

> Lion King those are amoung the best!!! There was alot to do in

Animal Kingdom too. The Jeep ride was fun

> also. But don't worry about food. They also have pop and

sandwiches waiting in fridge for when you get there.

> We were in house 150. Right by the pool on the last day we spent

the whole day relaxing by the pool.

> It's soooo much fun. Lots to do in the evenings at GTKTW. You'll

have a blast. Bring lots of sunscreen!!!

> Meghan got a little red but the was it. They have extra tickets

there for different shows we took her to the

> Kenedy Space Center shich she also enjoyed. There's so much stuff

to do and before you kow it's time to go home.

>

> osdbmom <osdbmom@...> wrote:

> --

>

> Dayna!! we are about to die of excitement over here, I can tell you

> that much!!

> All the kids are so excited. They put Savannah thru as a rush wish, in

> light of her anxiety/emotional stuff lately, and we get to go in May.

> My parents are able to come with us, too, so we'll have one adult per

> kid--woohoo!! Thinking about her trip is the ONLY thing that makes

> Savannah even start to crack a smile anymore.

> Her wish was to meet cinderella. they are going to try to arrange for

> a meal with the princesses. Went to the MAW office on Monday and they

> were so nice, let her pick things out of the magic closet, etc and she

> had fun. She is WAY excited about the limo ride.

> I have one question, I dont know if you might know the answer to.

> Savannah is allergic to milk and egg, and Brennan to milk. The MAW

> office said they would let them know, but werent sure if they would

> provide special food or not? but then, they tell us that the fridge

> will be stocked, and we eat at GKTW for breakfast and dinner.....what

> do we do if there isnt anything the kids can eat? and the ice cream

> shop....she keeps asking me if they sell Rice Dream Ice Cream there:)

> and the princess meal......she'll be so bummed if she cant eat with

them.

>

> do you happen to know?

>

> thanks,

> valarie

>

> - In , " Dayna S Fladhammer " <dfladhammer@> wrote:

> >

> > ,

> >

> >

> >

> > We went to GKTW!!! It was awesome! In fact, we liked it so much

> that when

> > Kate gets her wish, she says she wants to go there (not to Disney, not

> > Universal, just Give Kids The World!)

> >

> >

> >

> > Let me know if I can help at all. I have some cool pictures and

> such! You

> > will have SUCH an amazing time there!

> >

> >

> >

> > Dayna

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On

> Behalf Of

> > osdbmom

> > Sent: Wednesday, March 21, 2007 9:58 AM

> >

> > Subject: Re: need cheering up ideas

> >

> >

> >

> > --

> >

> > Hi!

> > Im so sorry your little girl is struggling. It hurts the mommy heart,

> > doesnt it? My 9 yr old with CVID has been struggling with anxiety and

> > depression for a couple months now, and I can honestly say, this

> > emotional stuff is WAY harder than the physical stuff, to me. I feel

> > like, with asthma, or with infections, I have a game plan, a " mode " I

> > can go into, I know what to do, who to call, etc. But this stuff? I

> > feel like Im floundering, trying this and that, trying to help and

> > half the time failing.

> > Ive been trying to give something to look forward to. We hadnt had

> > much success with this, until the Make a Wish call came in last week.

> > After they called and told Savannah her trip was coming, and soon,

> > we've seen a little sparkle back in her eye we havent seen in some

> > time. Even though its a couple months away, having something to look

> > forward too is giving her a little bit of hope. When she is very

> > down, we talk about things we might do at Disney, what the GKTW place

> > might be like, or even look up pics on the internet. Its something she

> > can focus on. Im trying to find some activity for her to do--something

> > that wont cause her more illness/sicknesses, but something she can

> > think about. Most of the time I cant get her to call friends on the

> > phone. BUT, my best friend has a little baby that REALLY cheers her

> > up. If she is not contagious, might you know someone with a baby?

> > Something about a baby is so healing!! Its hard to feel down when you

> > are watching a baby watching you, or making little gurgles. Playing

> > with my friends baby really cheers her up for a while. She wont play

> > anymore. None of her toys, books, or games hold any interest for her

> > anymore:(

> > Will she do crafts? learn a skill, like sewing? Rose Art has a lot of

> > little,inexpensive craft sets.

> > Im trying to think of something that she might be able to do that

> > might help other kids.

> > Will she write? short stories? bake with you? I know its hard when the

> > weather is cold. Sometimes I feel like if I could just get Savannah

> > out in the sun, or go sit at the lake, life would feel better to

> > her--but stuck in the house, with snow and rain and wind, just that in

> > itself is depressing.

> > I hope she is doing better.

> >

> > valarie

> >

> > - In groups (DOT) <mailto:%40> com, Dale

> > Weatherford <dale@> wrote:

> > >

> > > plant4birds wrote:

> > > >

> > > >

> > > > Hi! This is Betty, mom to Laurel and Ian, both with PID. Laurel

> > > > (10)

> > >

> > >

> > > Betty, I'm glad we can encourage you while you are stuck inside with

> > two

> > > PID-ers!

> > >

> > > They key to this may be that she's 10. There's something about that

> > age

> > > that struck me. I know that most kids between 10 and 12 become

> > aware of

> > > their mortality in a new way. Some become downright maudlin.

> > >

> > > When cheering up didn't work with my daughter (when she was age

> 11-13),

> > > it usually meant that something was troubling her deep inside that

> she

> > > needed to talk about. I've never used the art therapy that Dayna

> > > recommended, but we did a lot of backrubs from Mom and giving her

> > > permission to talk about how she's really feeling deep down inside.

> > > Now, that's not fun to hear as a Mom. It was scary to hear that

Katy

> > > felt like she was dying and the doctors didn't care and her friends

> > > didn't care and her parents didn't care, etc, etc, etc. But, by

> > > listening, I was able to answer her questions and point out some

> errors

> > > in her thinking. Kids won't tell their parents their real

thoughts if

> > > they are afraid that you can't handle her thoughts -- so it's

> important

> > > that you tell her ahead of time -- if you have questions that I

don't

> > > know the answers to -- we'll work on them together and I'll help

you

> > > find out. I would tell her: " when I'm worried about something and I

> > > just need to talk, I talk to your Daddy and sometimes we don't

> come up

> > > with answers, we just cry together. I want you to know that if you

> > need

> > > to cry, I'll cry with you. " Once Katy got into this mood, no amount

> > > of cheering her up would work -- but coming alongside her and

" being

> > > there " for her, did. Now, my best friend has a child that if you

> > pull

> > > up a stool and cry with her - you'll be crying for the rest of your

> > > life! That child doesn't need a caring ear -- she needs someone to

> > > distract her from her pain. What I'm saying is that you know

best how

> > > to deal with your daughter and God will show you how to meet her

> needs.

> > >

> > > At ten, I was teaching Katy how to sew by hand and she made stuffed

> > toys

> > > and then clothes for all her animals. They weren't fancy or

> well-made,

> > > but she loved designing clothes and still does. Several ladies

in the

> > > church kept her supplied with scraps of material and trim stuff.

> > >

> > > Also, have you looked into " books on tape " at your local

library. My

> > > kids liked those for special treats.

> > >

> > > Also, have you taught her how to crochet. Katy and both

> enjoyed

> > > learning that.

> > >

> > > And my all time favorite is play dough. I've got a recipe if you

> > want it.

> > >

> > > Oh, are your kiddos on IVIG?

> > >

> > > Hope some of this helps,

> > > In His service,

> > > dale

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Valarie,

I sent you an email off list.

Dayna

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Wednesday, March 21, 2007 12:03 PM

Subject: Re: need cheering up ideas DAYNA

---

Do you know if they provide food for children with food allergies?

valarie

In groups (DOT) <mailto:%40> com, Wellnitz

<wellnitzlisa@...> wrote:

>

> - Hi

> We went to GTKTW last August Meghan's wish was with the Make aWish

of MN

> She got to have time alone with Mickey Mouse. You don't have to

worry about food

> at GKTW they have a ice cream palor with ice cream/pop al

trimmings on ice cream

> in evenings free pizza by the pool. Breakfast and Supper in the

little area that was by

> the pool Meghan (5) is still talking about Mickey Mouse and the

Princess's we spent a

> alot of time in toon town and didn't go on mayn of the rides due

to some that wouldnt

> be good for her heart but there was so many shows got to see

Beauty and the Beast Live and

> Lion King those are amoung the best!!! There was alot to do in

Animal Kingdom too. The Jeep ride was fun

> also. But don't worry about food. They also have pop and

sandwiches waiting in fridge for when you get there.

> We were in house 150. Right by the pool on the last day we spent

the whole day relaxing by the pool.

> It's soooo much fun. Lots to do in the evenings at GTKTW. You'll

have a blast. Bring lots of sunscreen!!!

> Meghan got a little red but the was it. They have extra tickets

there for different shows we took her to the

> Kenedy Space Center shich she also enjoyed. There's so much stuff

to do and before you kow it's time to go home.

>

> osdbmom <osdbmom@...> wrote:

> --

>

> Dayna!! we are about to die of excitement over here, I can tell you

> that much!!

> All the kids are so excited. They put Savannah thru as a rush wish, in

> light of her anxiety/emotional stuff lately, and we get to go in May.

> My parents are able to come with us, too, so we'll have one adult per

> kid--woohoo!! Thinking about her trip is the ONLY thing that makes

> Savannah even start to crack a smile anymore.

> Her wish was to meet cinderella. they are going to try to arrange for

> a meal with the princesses. Went to the MAW office on Monday and they

> were so nice, let her pick things out of the magic closet, etc and she

> had fun. She is WAY excited about the limo ride.

> I have one question, I dont know if you might know the answer to.

> Savannah is allergic to milk and egg, and Brennan to milk. The MAW

> office said they would let them know, but werent sure if they would

> provide special food or not? but then, they tell us that the fridge

> will be stocked, and we eat at GKTW for breakfast and dinner.....what

> do we do if there isnt anything the kids can eat? and the ice cream

> shop....she keeps asking me if they sell Rice Dream Ice Cream there:)

> and the princess meal......she'll be so bummed if she cant eat with

them.

>

> do you happen to know?

>

> thanks,

> valarie

>

> - In groups (DOT) <mailto:%40> com, " Dayna S

Fladhammer " <dfladhammer@> wrote:

> >

> > ,

> >

> >

> >

> > We went to GKTW!!! It was awesome! In fact, we liked it so much

> that when

> > Kate gets her wish, she says she wants to go there (not to Disney, not

> > Universal, just Give Kids The World!)

> >

> >

> >

> > Let me know if I can help at all. I have some cool pictures and

> such! You

> > will have SUCH an amazing time there!

> >

> >

> >

> > Dayna

> >

> >

> >

> > _____

> >

> > From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On

> Behalf Of

> > osdbmom

> > Sent: Wednesday, March 21, 2007 9:58 AM

> > groups (DOT) <mailto:%40> com

> > Subject: Re: need cheering up ideas

> >

> >

> >

> > --

> >

> > Hi!

> > Im so sorry your little girl is struggling. It hurts the mommy heart,

> > doesnt it? My 9 yr old with CVID has been struggling with anxiety and

> > depression for a couple months now, and I can honestly say, this

> > emotional stuff is WAY harder than the physical stuff, to me. I feel

> > like, with asthma, or with infections, I have a game plan, a " mode " I

> > can go into, I know what to do, who to call, etc. But this stuff? I

> > feel like Im floundering, trying this and that, trying to help and

> > half the time failing.

> > Ive been trying to give something to look forward to. We hadnt had

> > much success with this, until the Make a Wish call came in last week.

> > After they called and told Savannah her trip was coming, and soon,

> > we've seen a little sparkle back in her eye we havent seen in some

> > time. Even though its a couple months away, having something to look

> > forward too is giving her a little bit of hope. When she is very

> > down, we talk about things we might do at Disney, what the GKTW place

> > might be like, or even look up pics on the internet. Its something she

> > can focus on. Im trying to find some activity for her to do--something

> > that wont cause her more illness/sicknesses, but something she can

> > think about. Most of the time I cant get her to call friends on the

> > phone. BUT, my best friend has a little baby that REALLY cheers her

> > up. If she is not contagious, might you know someone with a baby?

> > Something about a baby is so healing!! Its hard to feel down when you

> > are watching a baby watching you, or making little gurgles. Playing

> > with my friends baby really cheers her up for a while. She wont play

> > anymore. None of her toys, books, or games hold any interest for her

> > anymore:(

> > Will she do crafts? learn a skill, like sewing? Rose Art has a lot of

> > little,inexpensive craft sets.

> > Im trying to think of something that she might be able to do that

> > might help other kids.

> > Will she write? short stories? bake with you? I know its hard when the

> > weather is cold. Sometimes I feel like if I could just get Savannah

> > out in the sun, or go sit at the lake, life would feel better to

> > her--but stuck in the house, with snow and rain and wind, just that in

> > itself is depressing.

> > I hope she is doing better.

> >

> > valarie

> >

> > - In groups (DOT) <mailto:%40> com, Dale

> > Weatherford <dale@> wrote:

> > >

> > > plant4birds wrote:

> > > >

> > > >

> > > > Hi! This is Betty, mom to Laurel and Ian, both with PID. Laurel

> > > > (10)

> > >

> > >

> > > Betty, I'm glad we can encourage you while you are stuck inside with

> > two

> > > PID-ers!

> > >

> > > They key to this may be that she's 10. There's something about that

> > age

> > > that struck me. I know that most kids between 10 and 12 become

> > aware of

> > > their mortality in a new way. Some become downright maudlin.

> > >

> > > When cheering up didn't work with my daughter (when she was age

> 11-13),

> > > it usually meant that something was troubling her deep inside that

> she

> > > needed to talk about. I've never used the art therapy that Dayna

> > > recommended, but we did a lot of backrubs from Mom and giving her

> > > permission to talk about how she's really feeling deep down inside.

> > > Now, that's not fun to hear as a Mom. It was scary to hear that

Katy

> > > felt like she was dying and the doctors didn't care and her friends

> > > didn't care and her parents didn't care, etc, etc, etc. But, by

> > > listening, I was able to answer her questions and point out some

> errors

> > > in her thinking. Kids won't tell their parents their real

thoughts if

> > > they are afraid that you can't handle her thoughts -- so it's

> important

> > > that you tell her ahead of time -- if you have questions that I

don't

> > > know the answers to -- we'll work on them together and I'll help

you

> > > find out. I would tell her: " when I'm worried about something and I

> > > just need to talk, I talk to your Daddy and sometimes we don't

> come up

> > > with answers, we just cry together. I want you to know that if you

> > need

> > > to cry, I'll cry with you. " Once Katy got into this mood, no amount

> > > of cheering her up would work -- but coming alongside her and

" being

> > > there " for her, did. Now, my best friend has a child that if you

> > pull

> > > up a stool and cry with her - you'll be crying for the rest of your

> > > life! That child doesn't need a caring ear -- she needs someone to

> > > distract her from her pain. What I'm saying is that you know

best how

> > > to deal with your daughter and God will show you how to meet her

> needs.

> > >

> > > At ten, I was teaching Katy how to sew by hand and she made stuffed

> > toys

> > > and then clothes for all her animals. They weren't fancy or

> well-made,

> > > but she loved designing clothes and still does. Several ladies

in the

> > > church kept her supplied with scraps of material and trim stuff.

> > >

> > > Also, have you looked into " books on tape " at your local

library. My

> > > kids liked those for special treats.

> > >

> > > Also, have you taught her how to crochet. Katy and both

> enjoyed

> > > learning that.

> > >

> > > And my all time favorite is play dough. I've got a recipe if you

> > want it.

> > >

> > > Oh, are your kiddos on IVIG?

> > >

> > > Hope some of this helps,

> > > In His service,

> > > dale

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

I know that when we went they said anything that you need just ask. They

supplied Oxygen and Nebulizer for Meghan along with Making Sure she was

comfortable. Someone Should contact you about what you need to make sure

everything is ready. We also asked for a stroller for her as she gets short of

breath easily they had it all there.

But I do know there is sooooo much food when they make the meals. You'll have

a blast!

osdbmom <osdbmom@...> wrote:

---

Do you know if they provide food for children with food allergies?

valarie

In , Wellnitz <wellnitzlisa@...> wrote:

>

> - Hi

> We went to GTKTW last August Meghan's wish was with the Make aWish

of MN

> She got to have time alone with Mickey Mouse. You don't have to

worry about food

> at GKTW they have a ice cream palor with ice cream/pop al

trimmings on ice cream

> in evenings free pizza by the pool. Breakfast and Supper in the

little area that was by

> the pool Meghan (5) is still talking about Mickey Mouse and the

Princess's we spent a

> alot of time in toon town and didn't go on mayn of the rides due

to some that wouldnt

> be good for her heart but there was so many shows got to see

Beauty and the Beast Live and

> Lion King those are amoung the best!!! There was alot to do in

Animal Kingdom too. The Jeep ride was fun

> also. But don't worry about food. They also have pop and

sandwiches waiting in fridge for when you get there.

> We were in house 150. Right by the pool on the last day we spent

the whole day relaxing by the pool.

> It's soooo much fun. Lots to do in the evenings at GTKTW. You'll

have a blast. Bring lots of sunscreen!!!

> Meghan got a little red but the was it. They have extra tickets

there for different shows we took her to the

> Kenedy Space Center shich she also enjoyed. There's so much stuff

to do and before you kow it's time to go home.

>

> osdbmom <osdbmom@...> wrote:

> --

>

> Dayna!! we are about to die of excitement over here, I can tell you

> that much!!

> All the kids are so excited. They put Savannah thru as a rush wish, in

> light of her anxiety/emotional stuff lately, and we get to go in May.

> My parents are able to come with us, too, so we'll have one adult per

> kid--woohoo!! Thinking about her trip is the ONLY thing that makes

> Savannah even start to crack a smile anymore.

> Her wish was to meet cinderella. they are going to try to arrange for

> a meal with the princesses. Went to the MAW office on Monday and they

> were so nice, let her pick things out of the magic closet, etc and she

> had fun. She is WAY excited about the limo ride.

> I have one question, I dont know if you might know the answer to.

> Savannah is allergic to milk and egg, and Brennan to milk. The MAW

> office said they would let them know, but werent sure if they would

> provide special food or not? but then, they tell us that the fridge

> will be stocked, and we eat at GKTW for breakfast and dinner.....what

> do we do if there isnt anything the kids can eat? and the ice cream

> shop....she keeps asking me if they sell Rice Dream Ice Cream there:)

> and the princess meal......she'll be so bummed if she cant eat with

them.

>

> do you happen to know?

>

> thanks,

> valarie

>

> - In , " Dayna S Fladhammer " <dfladhammer@> wrote:

> >

> > ,

> >

> >

> >

> > We went to GKTW!!! It was awesome! In fact, we liked it so much

> that when

> > Kate gets her wish, she says she wants to go there (not to Disney, not

> > Universal, just Give Kids The World!)

> >

> >

> >

> > Let me know if I can help at all. I have some cool pictures and

> such! You

> > will have SUCH an amazing time there!

> >

> >

> >

> > Dayna

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On

> Behalf Of

> > osdbmom

> > Sent: Wednesday, March 21, 2007 9:58 AM

> >

> > Subject: Re: need cheering up ideas

> >

> >

> >

> > --

> >

> > Hi!

> > Im so sorry your little girl is struggling. It hurts the mommy heart,

> > doesnt it? My 9 yr old with CVID has been struggling with anxiety and

> > depression for a couple months now, and I can honestly say, this

> > emotional stuff is WAY harder than the physical stuff, to me. I feel

> > like, with asthma, or with infections, I have a game plan, a " mode " I

> > can go into, I know what to do, who to call, etc. But this stuff? I

> > feel like Im floundering, trying this and that, trying to help and

> > half the time failing.

> > Ive been trying to give something to look forward to. We hadnt had

> > much success with this, until the Make a Wish call came in last week.

> > After they called and told Savannah her trip was coming, and soon,

> > we've seen a little sparkle back in her eye we havent seen in some

> > time. Even though its a couple months away, having something to look

> > forward too is giving her a little bit of hope. When she is very

> > down, we talk about things we might do at Disney, what the GKTW place

> > might be like, or even look up pics on the internet. Its something she

> > can focus on. Im trying to find some activity for her to do--something

> > that wont cause her more illness/sicknesses, but something she can

> > think about. Most of the time I cant get her to call friends on the

> > phone. BUT, my best friend has a little baby that REALLY cheers her

> > up. If she is not contagious, might you know someone with a baby?

> > Something about a baby is so healing!! Its hard to feel down when you

> > are watching a baby watching you, or making little gurgles. Playing

> > with my friends baby really cheers her up for a while. She wont play

> > anymore. None of her toys, books, or games hold any interest for her

> > anymore:(

> > Will she do crafts? learn a skill, like sewing? Rose Art has a lot of

> > little,inexpensive craft sets.

> > Im trying to think of something that she might be able to do that

> > might help other kids.

> > Will she write? short stories? bake with you? I know its hard when the

> > weather is cold. Sometimes I feel like if I could just get Savannah

> > out in the sun, or go sit at the lake, life would feel better to

> > her--but stuck in the house, with snow and rain and wind, just that in

> > itself is depressing.

> > I hope she is doing better.

> >

> > valarie

> >

> > - In groups (DOT) <mailto:%40> com, Dale

> > Weatherford <dale@> wrote:

> > >

> > > plant4birds wrote:

> > > >

> > > >

> > > > Hi! This is Betty, mom to Laurel and Ian, both with PID. Laurel

> > > > (10)

> > >

> > >

> > > Betty, I'm glad we can encourage you while you are stuck inside with

> > two

> > > PID-ers!

> > >

> > > They key to this may be that she's 10. There's something about that

> > age

> > > that struck me. I know that most kids between 10 and 12 become

> > aware of

> > > their mortality in a new way. Some become downright maudlin.

> > >

> > > When cheering up didn't work with my daughter (when she was age

> 11-13),

> > > it usually meant that something was troubling her deep inside that

> she

> > > needed to talk about. I've never used the art therapy that Dayna

> > > recommended, but we did a lot of backrubs from Mom and giving her

> > > permission to talk about how she's really feeling deep down inside.

> > > Now, that's not fun to hear as a Mom. It was scary to hear that

Katy

> > > felt like she was dying and the doctors didn't care and her friends

> > > didn't care and her parents didn't care, etc, etc, etc. But, by

> > > listening, I was able to answer her questions and point out some

> errors

> > > in her thinking. Kids won't tell their parents their real

thoughts if

> > > they are afraid that you can't handle her thoughts -- so it's

> important

> > > that you tell her ahead of time -- if you have questions that I

don't

> > > know the answers to -- we'll work on them together and I'll help

you

> > > find out. I would tell her: " when I'm worried about something and I

> > > just need to talk, I talk to your Daddy and sometimes we don't

> come up

> > > with answers, we just cry together. I want you to know that if you

> > need

> > > to cry, I'll cry with you. " Once Katy got into this mood, no amount

> > > of cheering her up would work -- but coming alongside her and

" being

> > > there " for her, did. Now, my best friend has a child that if you

> > pull

> > > up a stool and cry with her - you'll be crying for the rest of your

> > > life! That child doesn't need a caring ear -- she needs someone to

> > > distract her from her pain. What I'm saying is that you know

best how

> > > to deal with your daughter and God will show you how to meet her

> needs.

> > >

> > > At ten, I was teaching Katy how to sew by hand and she made stuffed

> > toys

> > > and then clothes for all her animals. They weren't fancy or

> well-made,

> > > but she loved designing clothes and still does. Several ladies

in the

> > > church kept her supplied with scraps of material and trim stuff.

> > >

> > > Also, have you looked into " books on tape " at your local

library. My

> > > kids liked those for special treats.

> > >

> > > Also, have you taught her how to crochet. Katy and both

> enjoyed

> > > learning that.

> > >

> > > And my all time favorite is play dough. I've got a recipe if you

> > want it.

> > >

> > > Oh, are your kiddos on IVIG?

> > >

> > > Hope some of this helps,

> > > In His service,

> > > dale

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Valarie,

We have never been to GKTW but we have been to WDW with many food allergies.

WDW is FABULOUS about making accomodations. All of the restaurants have ice

cream alternatives and make arrangements for anything else you need. We have

gone to several character breakfasts/dinners and I have a wheat allergy and the

chef makes me gluten/wheat free pasta, bread, cake etc. They also accomodate my

dairy allergic child and Sam who is allergic to everything else.

GKTW sounds awesome! I can't wait to hear about your trip!!!!

Betsy

osdbmom <osdbmom@...> wrote:

--

Dayna!! we are about to die of excitement over here, I can tell you

that much!!

All the kids are so excited. They put Savannah thru as a rush wish, in

light of her anxiety/emotional stuff lately, and we get to go in May.

My parents are able to come with us, too, so we'll have one adult per

kid--woohoo!! Thinking about her trip is the ONLY thing that makes

Savannah even start to crack a smile anymore.

Her wish was to meet cinderella. they are going to try to arrange for

a meal with the princesses. Went to the MAW office on Monday and they

were so nice, let her pick things out of the magic closet, etc and she

had fun. She is WAY excited about the limo ride.

I have one question, I dont know if you might know the answer to.

Savannah is allergic to milk and egg, and Brennan to milk. The MAW

office said they would let them know, but werent sure if they would

provide special food or not? but then, they tell us that the fridge

will be stocked, and we eat at GKTW for breakfast and dinner.....what

do we do if there isnt anything the kids can eat? and the ice cream

shop....she keeps asking me if they sell Rice Dream Ice Cream there:)

and the princess meal......she'll be so bummed if she cant eat with them.

do you happen to know?

thanks,

valarie

- In , " Dayna S Fladhammer " <dfladhammer@...> wrote:

>

> ,

>

>

>

> We went to GKTW!!! It was awesome! In fact, we liked it so much

that when

> Kate gets her wish, she says she wants to go there (not to Disney, not

> Universal, just Give Kids The World!)

>

>

>

> Let me know if I can help at all. I have some cool pictures and

such! You

> will have SUCH an amazing time there!

>

>

>

> Dayna

>

>

>

> _____

>

> From: [mailto: ] On

Behalf Of

> osdbmom

> Sent: Wednesday, March 21, 2007 9:58 AM

>

> Subject: Re: need cheering up ideas

>

>

>

> --

>

> Hi!

> Im so sorry your little girl is struggling. It hurts the mommy heart,

> doesnt it? My 9 yr old with CVID has been struggling with anxiety and

> depression for a couple months now, and I can honestly say, this

> emotional stuff is WAY harder than the physical stuff, to me. I feel

> like, with asthma, or with infections, I have a game plan, a " mode " I

> can go into, I know what to do, who to call, etc. But this stuff? I

> feel like Im floundering, trying this and that, trying to help and

> half the time failing.

> Ive been trying to give something to look forward to. We hadnt had

> much success with this, until the Make a Wish call came in last week.

> After they called and told Savannah her trip was coming, and soon,

> we've seen a little sparkle back in her eye we havent seen in some

> time. Even though its a couple months away, having something to look

> forward too is giving her a little bit of hope. When she is very

> down, we talk about things we might do at Disney, what the GKTW place

> might be like, or even look up pics on the internet. Its something she

> can focus on. Im trying to find some activity for her to do--something

> that wont cause her more illness/sicknesses, but something she can

> think about. Most of the time I cant get her to call friends on the

> phone. BUT, my best friend has a little baby that REALLY cheers her

> up. If she is not contagious, might you know someone with a baby?

> Something about a baby is so healing!! Its hard to feel down when you

> are watching a baby watching you, or making little gurgles. Playing

> with my friends baby really cheers her up for a while. She wont play

> anymore. None of her toys, books, or games hold any interest for her

> anymore:(

> Will she do crafts? learn a skill, like sewing? Rose Art has a lot of

> little,inexpensive craft sets.

> Im trying to think of something that she might be able to do that

> might help other kids.

> Will she write? short stories? bake with you? I know its hard when the

> weather is cold. Sometimes I feel like if I could just get Savannah

> out in the sun, or go sit at the lake, life would feel better to

> her--but stuck in the house, with snow and rain and wind, just that in

> itself is depressing.

> I hope she is doing better.

>

> valarie

>

> - In groups (DOT) <mailto:%40> com, Dale

> Weatherford <dale@> wrote:

> >

> > plant4birds wrote:

> > >

> > >

> > > Hi! This is Betty, mom to Laurel and Ian, both with PID. Laurel

> > > (10)

> >

> >

> > Betty, I'm glad we can encourage you while you are stuck inside with

> two

> > PID-ers!

> >

> > They key to this may be that she's 10. There's something about that

> age

> > that struck me. I know that most kids between 10 and 12 become

> aware of

> > their mortality in a new way. Some become downright maudlin.

> >

> > When cheering up didn't work with my daughter (when she was age

11-13),

> > it usually meant that something was troubling her deep inside that

she

> > needed to talk about. I've never used the art therapy that Dayna

> > recommended, but we did a lot of backrubs from Mom and giving her

> > permission to talk about how she's really feeling deep down inside.

> > Now, that's not fun to hear as a Mom. It was scary to hear that Katy

> > felt like she was dying and the doctors didn't care and her friends

> > didn't care and her parents didn't care, etc, etc, etc. But, by

> > listening, I was able to answer her questions and point out some

errors

> > in her thinking. Kids won't tell their parents their real thoughts if

> > they are afraid that you can't handle her thoughts -- so it's

important

> > that you tell her ahead of time -- if you have questions that I don't

> > know the answers to -- we'll work on them together and I'll help you

> > find out. I would tell her: " when I'm worried about something and I

> > just need to talk, I talk to your Daddy and sometimes we don't

come up

> > with answers, we just cry together. I want you to know that if you

> need

> > to cry, I'll cry with you. " Once Katy got into this mood, no amount

> > of cheering her up would work -- but coming alongside her and " being

> > there " for her, did. Now, my best friend has a child that if you

> pull

> > up a stool and cry with her - you'll be crying for the rest of your

> > life! That child doesn't need a caring ear -- she needs someone to

> > distract her from her pain. What I'm saying is that you know best how

> > to deal with your daughter and God will show you how to meet her

needs.

> >

> > At ten, I was teaching Katy how to sew by hand and she made stuffed

> toys

> > and then clothes for all her animals. They weren't fancy or

well-made,

> > but she loved designing clothes and still does. Several ladies in the

> > church kept her supplied with scraps of material and trim stuff.

> >

> > Also, have you looked into " books on tape " at your local library. My

> > kids liked those for special treats.

> >

> > Also, have you taught her how to crochet. Katy and both

enjoyed

> > learning that.

> >

> > And my all time favorite is play dough. I've got a recipe if you

> want it.

> >

> > Oh, are your kiddos on IVIG?

> >

> > Hope some of this helps,

> > In His service,

> > dale

> >

>

>

>

>

>

>

[Guest guest]

--- Hi all,

I do not write often but do read everything and keep up with all of

you. My son Lucas is 11 and we applied for MWF a few years ago. We

were told that CVID is not life threatening and that we did not

qualify. Have the criterias changed. My son is really having a tough

time now as well. He has always had very severe anxiety, depression,

and is ADD, has SI issues etc. Although he is doing OK physically on

SCIg he is really upset about the retesting results this summer. We

were basically told that he will not outgrow this and it is lifelong.

He is bargaining with everyone to get out of his SCIg. I do it at

night with sedation. I works OK but is tiring for me since I have to

stay up during the night to do it. Fortuanately it is only once a

week. So back to the Make a Wish. Are you finding that they are

accepting you on what basis. I know some kids are much sicker than

others so I was just wondering. BARBIE Lucas 11 CVID, SCIg, etc.

[Guest guest]

---all 3 of my kids qualify under CVID. Their pulmo filled out the

paperwork for Savannah and they called and said that based on that,

she was medically eligible.

I would ask again. We went online and filled out the form.

valarie

In , " Barbara Jimenez " <mother5590@...> wrote:

>

> --- Hi all,

> I do not write often but do read everything and keep up with all of

> you. My son Lucas is 11 and we applied for MWF a few years ago. We

> were told that CVID is not life threatening and that we did not

> qualify. Have the criterias changed. My son is really having a tough

> time now as well. He has always had very severe anxiety, depression,

> and is ADD, has SI issues etc. Although he is doing OK physically on

> SCIg he is really upset about the retesting results this summer. We

> were basically told that he will not outgrow this and it is lifelong.

> He is bargaining with everyone to get out of his SCIg. I do it at

> night with sedation. I works OK but is tiring for me since I have to

> stay up during the night to do it. Fortuanately it is only once a

> week. So back to the Make a Wish. Are you finding that they are

> accepting you on what basis. I know some kids are much sicker than

> others so I was just wondering. BARBIE Lucas 11 CVID, SCIg, etc.

>

[Guest guest]

Meghan was accepted because of her diagnoses and of Dr's stating that

she is medically fragile (of which she still is). Her Diagnoses of heart and

lung disease also.

we are scheduled for another heart catherization next wed at 730a this is her

2nd

in 2 yrs. She has had 2 open heart surgery's besides. I think that it also

depends

on each chapter of Make A Wish. Minnesota has there's as any child with a

life threatening condition of one that has gone through a life threatening

illness.

That was what was on our papers that i still have. All you have to do is go

to their web

site and do the referall they call, and talk to Dr's complete necessary

paperwork and

a volunteer comes out once you've been approved. At least that was how our's

was done others

may be different.

osdbmom <osdbmom@...> wrote:

---all 3 of my kids qualify under CVID. Their pulmo filled out the

paperwork for Savannah and they called and said that based on that,

she was medically eligible.

I would ask again. We went online and filled out the form.

valarie

In , " Barbara Jimenez " <mother5590@...> wrote:

>

> --- Hi all,

> I do not write often but do read everything and keep up with all of

> you. My son Lucas is 11 and we applied for MWF a few years ago. We

> were told that CVID is not life threatening and that we did not

> qualify. Have the criterias changed. My son is really having a tough

> time now as well. He has always had very severe anxiety, depression,

> and is ADD, has SI issues etc. Although he is doing OK physically on

> SCIg he is really upset about the retesting results this summer. We

> were basically told that he will not outgrow this and it is lifelong.

> He is bargaining with everyone to get out of his SCIg. I do it at

> night with sedation. I works OK but is tiring for me since I have to

> stay up during the night to do it. Fortuanately it is only once a

> week. So back to the Make a Wish. Are you finding that they are

> accepting you on what basis. I know some kids are much sicker than

> others so I was just wondering. BARBIE Lucas 11 CVID, SCIg, etc.

>

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