Re:

[Guest guest]

Dear Leanne,

Just a note to say I've been thinking of Isaac today as he has his surgery. I do

hope it went well and that things get a chance to settle down from now on.

Enough is enough for the poor little kid, and you must be mentally worn out too.

Hannah's gtube work is always done endoscopically and we get a good idea of what

is going on all the way down there every time she has gastro surgery, which

fortunately has only been 3 times

BTW, yes, I have " seen " Cara on the aussie ketogenic diet list. Good to know you

have each other for support. Did you meet because of your children?

Love and hugs to your little Isaac and lots for you too.

(Hannah's mum, Melbourne)

[Guest guest]

Regina, Of course she is giving you kisses!! Koti loves to give

kisses, too. When you ask her for one she opens her mouth REALLY wide and

searches for you. Or sometimes she will want a kiss and just open her

mouth and kiss you all over your face until she finds your mouth, or we

put our mouth on hers!!( needless to say when we are holding her, our

faces are usually dripping with slobber. But hey, love is love, right?)

Everything will be fine on Monday. I will keep you all in my prayers.

Koti has had her tube for 4 months, it really was the best thing. Let us

know how everything goes! - mom 2 Koti

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[Guest guest]

Hi Kate

No worries about the delay, you've had a lot on your plate recently I'm sure.

We give Hannah chloral hydrate to sleep. It was not our first choice by any

means, but when Hannah started the ketogenic diet we had to remove as much

carbohydrate from her intake as possible. The vallergan forte that we had used

till then was quite syrupy, and we had to change to a carb free product. Chloral

hydrate was the one suggested and we tried it. Gets her off to sleep fairly

quickly, but she sometimes cries when getting drowsy with it. I think it affects

her because it is a known hallucinogen, which is not ideal, but then not a lot

of things with Hannah ARE ideal if you know what I mean.

We also tried temazepam tablets, but they were not effective for Hannah. Long

term I dont think any of these things are okay, but at the same time they are

essential for a reasonable family existence. You might want to do a web search

about the C.H.

Regards

(Hannah's mum, Australia)

Hi

Thank you for your note of ages ago, apologies for not responding. I read

in one of your mails that Hannah has something to help her sleep at night

and wondered what it was?

Sleeping at nights is still a problem for Isaac, very hit and miss and most

nights we give him 1/2ml of Temazepan - this is not ideal for long term use,

so I am looking for alternatives.

Hope all is calm in your life today!

Kate and Isaac (4)

(6) and Elijah (5 months)

[Guest guest]

Forgot to add in the last post to you Kate.....have you considered the ketogenic

diet to try and reduce seizures? It reduced Hannah's by half and she has been

able to come totally off one of the 3 seizure meds she was taking when the diet

started. SHe will always have seizures as her PMG is severe and the effects are

profound, but the diet worked better than any of the 6 or 7 med we have tried.

Just some food for thought

One of Isaacs biggest problems is his seizures, we aren't controlling them

very well and are almost at the end of the recommended medications.

Generally Isaac is still the most beautiful angel I know!

Take care

Kate and Isaac (4)

(6) and Elijah (5 months)

[Guest guest]

Hi Regina,

Firstly, thank you for praying for us all. In that way you most certainly DO

offer much to the group.

Secondly I want to wish you well for the gtube hospital trip. I can tell you

that a gtube makes ALL the difference to getting meds into a " difficult " child.

LOL! Believe me I know only too well, and we believe that getting a gtube for

Hannah was one of the best choices we have ever made for her. She was not

getting enough nutrition or fluid, and meds were a pill to give ( pun intended!

) It is a big step, but one which I am sure you have thought carefully about,

and will not be disappointed as you have obviously weighed the pros and cons. If

you ever want to ask me about our experience please feel free to write to me

here on the list or directly at gkrbh@... . I will do my best to answer

any questions based on my own experience with Hannah's.

Hannah has a severe seizure disorder because of the extensive PMG, and she also

has CVI and major developmental delays. Intellectually she is like an infant,

and she is 100% dependent for all things. She takes topamax and clonazepam, and

a year ago we totally weaned Lamictal because the ketogenic diet reduced

seizures so well that she really didnt need all those drugs in her system. The

Keto diet is the next best choice we have ever made for Hannah, as it reduced

her sz by half, much better than any drug ever did (we have tried about 6)

Will be thinking of you and on Monday. Do let us know how the surgery goes

(when you have the time of course)

Love and hugs and prayers

(Hannah's mum, Australia)

I realize that I don't offer much to the group but I pray every day for our

angels. Most nights I fall asleep saying the ry.

is going to CHOP Philadelphia on Monday to get a G-tube. She drinks her

bottles fine, but getting her 20 cc's of varoius meds into her 3 times a day is

a challenge. She is typically ng fed 3-4 days of every month because she

seizing so much and she's just too tired to drink. Please keep in your

thoughts on Monday. The G-tube is something we really think will help but

the actuality that it's really going to happen on Monday is just sinking in.

has cerebral dysgenesis or hemimegalencephaly. Her right side of her

brain is considerably larger than her right but both sides are abnormally formed

and she does not have a normal cortical ribbon. She has cortical vision

impairment, developmental delays and her seizures really interfere with

everything. The doctors say that she is not a candidate for surgery because

her seizures come from everywhere. Her EEG is really bad.

She's currently taking Depakene, Zonagram, Dilantin, Topamax, Carnitor and

Prilosec. We're weaning her off the Zonagram because since adding it, it

actually seems like her seizures actually got worse. We just currently added

the Dilantin because she was seizing 24/7 for two days and ended up in the ER

and they loaded her up with Dilantin. Then she finally slept a little bit but

when she woke up the seizures came right back. She typically seizes when she

first wakes up or when she's ready to go to sleep. Although we see a lot of

little " stuff " during the day.

About two months ago she started blowing raspberries and smiling. She also

likes to give kisses. We swear that when we ask her for a kiss she makes a

little kissing sound with her lips. She loves being held and seems happiest

when she's drinking her bottles. She gets developmental, vision, physical and

speech therapy. We have definitely seem great improvements in over the

past year. Things are just done on her time frame not anyone elses.

Thanks for listening

Regina

[Guest guest]

Hi Regina,

Firstly, thank you for praying for us all. In that way you most certainly DO

offer much to the group.

Secondly I want to wish you well for the gtube hospital trip. I can tell you

that a gtube makes ALL the difference to getting meds into a " difficult " child.

LOL! Believe me I know only too well, and we believe that getting a gtube for

Hannah was one of the best choices we have ever made for her. She was not

getting enough nutrition or fluid, and meds were a pill to give ( pun intended!

) It is a big step, but one which I am sure you have thought carefully about,

and will not be disappointed as you have obviously weighed the pros and cons. If

you ever want to ask me about our experience please feel free to write to me

here on the list or directly at gkrbh@... . I will do my best to answer

any questions based on my own experience with Hannah's.

Hannah has a severe seizure disorder because of the extensive PMG, and she also

has CVI and major developmental delays. Intellectually she is like an infant,

and she is 100% dependent for all things. She takes topamax and clonazepam, and

a year ago we totally weaned Lamictal because the ketogenic diet reduced

seizures so well that she really didnt need all those drugs in her system. The

Keto diet is the next best choice we have ever made for Hannah, as it reduced

her sz by half, much better than any drug ever did (we have tried about 6)

Will be thinking of you and on Monday. Do let us know how the surgery goes

(when you have the time of course)

Love and hugs and prayers

(Hannah's mum, Australia)

I realize that I don't offer much to the group but I pray every day for our

angels. Most nights I fall asleep saying the ry.

is going to CHOP Philadelphia on Monday to get a G-tube. She drinks her

bottles fine, but getting her 20 cc's of varoius meds into her 3 times a day is

a challenge. She is typically ng fed 3-4 days of every month because she

seizing so much and she's just too tired to drink. Please keep in your

thoughts on Monday. The G-tube is something we really think will help but

the actuality that it's really going to happen on Monday is just sinking in.

has cerebral dysgenesis or hemimegalencephaly. Her right side of her

brain is considerably larger than her right but both sides are abnormally formed

and she does not have a normal cortical ribbon. She has cortical vision

impairment, developmental delays and her seizures really interfere with

everything. The doctors say that she is not a candidate for surgery because

her seizures come from everywhere. Her EEG is really bad.

She's currently taking Depakene, Zonagram, Dilantin, Topamax, Carnitor and

Prilosec. We're weaning her off the Zonagram because since adding it, it

actually seems like her seizures actually got worse. We just currently added

the Dilantin because she was seizing 24/7 for two days and ended up in the ER

and they loaded her up with Dilantin. Then she finally slept a little bit but

when she woke up the seizures came right back. She typically seizes when she

first wakes up or when she's ready to go to sleep. Although we see a lot of

little " stuff " during the day.

About two months ago she started blowing raspberries and smiling. She also

likes to give kisses. We swear that when we ask her for a kiss she makes a

little kissing sound with her lips. She loves being held and seems happiest

when she's drinking her bottles. She gets developmental, vision, physical and

speech therapy. We have definitely seem great improvements in over the

past year. Things are just done on her time frame not anyone elses.

Thanks for listening

Regina

[Guest guest]

,

I certainly understand. My first and only child

was born last May and diagnosed with PMG. I had the

best prenatal care in the world and still nothing I

did or didn't do caused 's condition. My husband

once said having a child with a disability is like

belonging to a club no one else wants to belong to. We

went through the same feelings- it was all I could do

for a while to look at other children and not cry. We

cope by letting be our guide and consider him

to just be on his own time line for things. We rejoice

in the small accomplishments. , comparatively

speaking, is doing remarkably well. She sounds cute as

a button.

The condition is different for each child. has

very little balance for sitting up and has physical

problems with his arms so it is a real effort for him

to crawl and he has seizures but he loves to laugh and

go swinging and swimming and be kissed. He's even

started to be able to use his hands and arms more

since yesterday. Good luck with .

in Houston

--- ajbdvm wrote:

> I am new to the group, and I don't know whether or

> not I will stay

> because I think I may not be ready yet to find out

> so much about how

> my daughter will develop.

> I am not sure what type of cortical dysplasia

> has. She is 13

> months old, and we have known since 5 months old

> that she has

> cortical dysplasia. I was told at Miami Childrens

> Hospital that at

> 5 months there was still too much undeveloped to

> further

> characterize the dysplasia.

> is very happy and somewhat vocal. She says

> " d " and " m " and

> has a happy loud noise that she makes. She can roll

> over, but she

> can not sit independently unless you place her in a

> sitting

> position, and then only if a really good video is

> on. She will bear

> weight on her feet for a couple of minutes; once

> again, only if

> she's well entertained and if someone's hodling her.

> She can eat

> well, but she refluxes an inordinate number of times

> each day.

> I don't think I am adjusting to having a disabled

> child nearly as

> well as it sounds like the rest of you are. I'm

> angry at the ob/gyn

> community for making it seem as if good prenatal

> care could predict

> or prevent this type of outcome. I'm annoyed when I

> am around

> people with healthy, normal babies (particularly

> those that are

> younger than and able to do more). I get

> very tired of

> everyone telling me how great she's coming along as

> if each new

> skill she acquires was developing in a time vacuum.

> I am also tired

> of people telling me about someone they know whose

> child started out

> with a delay and then grew up normal, as if all

> developmental delays

> were the same and 's might someday vanish.

> I only just heard of the doctor in Chicago who has

> diagnosed so many

> of your children. I am going to send photos, a

> medical synopsis,

> and the MRI of to him. Maybe I will be less

> frustrated if I

> had a little bit more specific information than

> has cortical

> dysplasia, she'll have seizures, and be learning

> disabled. That

> is all I've been told so far. I also have the

> experience ( I don't

> know if everyone else does) of never being able to

> get any kind of

> answers from a general practitioner about .

> Anything I ask

> warrants the response: that must be related to

> 's condition.

> Anyway, sorry to vent on all of you. I hope I am

> able to get more

> answers and get more used to however will be.

> She's a sweet,

> smiley baby.

> Thanks for listening.

> -

>

>

__________________________________________________

[Guest guest]

Hi ,

My name is Helena, I live in the uk, and have a 5 1/2year old daughter, who has

gross developmental delay, and is also deaf. We have a preliminary diagnosis of

a cortical migration disorder, suggestive of PMG, and we are waiting to see a

neurologist in Leeds to try and get more information about her disorder. I felt

I must just write and let you know that I understand the frustrations that you

feel, people trying to be good natured, saying things will improve, and that

they know a child who was a bit slow and is ok now. I have experienced the same

reaction from well meaning friends who don't really know what to say to me.

Infact grandparents are the worse ones, they could not seem to accept that

has a disability, which is why she is as she is, she will not grow out of it or

" do ok " . I found venting my frustrations to this group helps, it is great when

someone listens to you without them having to feel they need to give you an

answer, or a reason, do you understand what I mean?

Also on a positive note, my daughter was unable to sit unaided until she

was about 15 months old, she was nearly three before she walked, and now she is

5 years and is coping ok in mainstream school with a lot of help. I don't ever

think you really come to terms with the fact that you have a disabled child, one

of the things I find is that when a friends child achieves a milestone, it sets

me off grieving again, because I don't know if will ever achieve the same.

That was quite a hard thing to accept , the fact that I probably wont ever come

to terms with her disability, but I will and am learning to cope better each day

I look at her when she is asleep and think I must do everything I can to help

her, it is not her fault ( or anyone's) that she is as she is, but me and my

husband are all she has got and we have to help her to achieve the best possible

life we can.

Please feel free to ask me anything you think may help you.

thinking of you

Helena

I am new to the group, and I don't know whether or not I will stay

because I think I may not be ready yet to find out so much about how

my daughter will develop.

I am not sure what type of cortical dysplasia has. She is 13

months old, and we have known since 5 months old that she has

cortical dysplasia. I was told at Miami Childrens Hospital that at

5 months there was still too much undeveloped to further

characterize the dysplasia.

is very happy and somewhat vocal. She says " d " and " m " and

has a happy loud noise that she makes. She can roll over, but she

can not sit independently unless you place her in a sitting

position, and then only if a really good video is on. She will bear

weight on her feet for a couple of minutes; once again, only if

she's well entertained and if someone's hodling her. She can eat

well, but she refluxes an inordinate number of times each day.

I don't think I am adjusting to having a disabled child nearly as

well as it sounds like the rest of you are. I'm angry at the ob/gyn

community for making it seem as if good prenatal care could predict

or prevent this type of outcome. I'm annoyed when I am around

people with healthy, normal babies (particularly those that are

younger than and able to do more). I get very tired of

everyone telling me how great she's coming along as if each new

skill she acquires was developing in a time vacuum. I am also tired

of people telling me about someone they know whose child started out

with a delay and then grew up normal, as if all developmental delays

were the same and 's might someday vanish.

I only just heard of the doctor in Chicago who has diagnosed so many

of your children. I am going to send photos, a medical synopsis,

and the MRI of to him. Maybe I will be less frustrated if I

had a little bit more specific information than has cortical

dysplasia, she'll have seizures, and be learning disabled. That

is all I've been told so far. I also have the experience ( I don't

know if everyone else does) of never being able to get any kind of

answers from a general practitioner about . Anything I ask

warrants the response: that must be related to 's condition.

Anyway, sorry to vent on all of you. I hope I am able to get more

answers and get more used to however will be. She's a sweet,

smiley baby.

Thanks for listening.

-

[Guest guest]

, Sorry for mixing you up with your daughter , I was so anxious to

reply to you, as I just remember having all the same feelings and wanted you to

know you are not alone. Appologies again. Helena

I am new to the group, and I don't know whether or not I will stay

because I think I may not be ready yet to find out so much about how

my daughter will develop.

I am not sure what type of cortical dysplasia has. She is 13

months old, and we have known since 5 months old that she has

cortical dysplasia. I was told at Miami Childrens Hospital that at

5 months there was still too much undeveloped to further

characterize the dysplasia.

is very happy and somewhat vocal. She says " d " and " m " and

has a happy loud noise that she makes. She can roll over, but she

can not sit independently unless you place her in a sitting

position, and then only if a really good video is on. She will bear

weight on her feet for a couple of minutes; once again, only if

she's well entertained and if someone's hodling her. She can eat

well, but she refluxes an inordinate number of times each day.

I don't think I am adjusting to having a disabled child nearly as

well as it sounds like the rest of you are. I'm angry at the ob/gyn

community for making it seem as if good prenatal care could predict

or prevent this type of outcome. I'm annoyed when I am around

people with healthy, normal babies (particularly those that are

younger than and able to do more). I get very tired of

everyone telling me how great she's coming along as if each new

skill she acquires was developing in a time vacuum. I am also tired

of people telling me about someone they know whose child started out

with a delay and then grew up normal, as if all developmental delays

were the same and 's might someday vanish.

I only just heard of the doctor in Chicago who has diagnosed so many

of your children. I am going to send photos, a medical synopsis,

and the MRI of to him. Maybe I will be less frustrated if I

had a little bit more specific information than has cortical

dysplasia, she'll have seizures, and be learning disabled. That

is all I've been told so far. I also have the experience ( I don't

know if everyone else does) of never being able to get any kind of

answers from a general practitioner about . Anything I ask

warrants the response: that must be related to 's condition.

Anyway, sorry to vent on all of you. I hope I am able to get more

answers and get more used to however will be. She's a sweet,

smiley baby.

Thanks for listening.

-

[Guest guest]

Helena & & everyone...

It is truly amazing how similar we all feel! My name is Sharon and I am mom to

Casey a 11 mo. old boy with PMG. We found out his condition at just 5 days old.

You sometimes wonder if the feelings you have are horrible. I have spent this

last year with no one to talk to, other than my husband, and you can't always

say what you feel! Somedays are good for me and I don't want to go into the

frustration I feel and the same for him.

I didn't feel ready to join this group. BUT I spent a week just reading all of

your emails and crying. (My husband can't figure out what is wrong with me.) I

have found strength in all of yours. Listening to your stories and your venting

and knowing that how I feel is OK. I have been invited to join so many play

groups and I just haven't been able to go. BECAUSE I don't want to explain. My

sister is really close to me and even she calls to vent about her life with 4

kids and all the chaos and then she feels bad. And so do I. I don't want to feel

this way.

Thank you for all your sharing. I look forward to stop crying and feeling better

about the difficulties we share.

Sharon & Casey

adam wrote: Hi ,

My name is Helena, I live in the uk, and have a 5 1/2year old daughter, who has

gross developmental delay, and is also deaf. We have a preliminary diagnosis of

a cortical migration disorder, suggestive of PMG, and we are waiting to see a

neurologist in Leeds to try and get more information about her disorder. I felt

I must just write and let you know that I understand the frustrations that you

feel, people trying to be good natured, saying things will improve, and that

they know a child who was a bit slow and is ok now. I have experienced the same

reaction from well meaning friends who don't really know what to say to me.

Infact grandparents are the worse ones, they could not seem to accept that

has a disability, which is why she is as she is, she will not grow out of it or

" do ok " . I found venting my frustrations to this group helps, it is great when

someone listens to you without them having to feel they need to give you an

answer, or a reason, do you understand what I mean?

Also on a positive note, my daughter was unable to sit unaided until she

was about 15 months old, she was nearly three before she walked, and now she is

5 years and is coping ok in mainstream school with a lot of help. I don't ever

think you really come to terms with the fact that you have a disabled child, one

of the things I find is that when a friends child achieves a milestone, it sets

me off grieving again, because I don't know if will ever achieve the same.

That was quite a hard thing to accept , the fact that I probably wont ever come

to terms with her disability, but I will and am learning to cope better each day

I look at her when she is asleep and think I must do everything I can to help

her, it is not her fault ( or anyone's) that she is as she is, but me and my

husband are all she has got and we have to help her to achieve the best possible

life we can.

Please feel free to ask me anything you think may help you.

thinking of you

Helena

I am new to the group, and I don't know whether or not I will stay

because I think I may not be ready yet to find out so much about how

my daughter will develop.

I am not sure what type of cortical dysplasia has. She is 13

months old, and we have known since 5 months old that she has

cortical dysplasia. I was told at Miami Childrens Hospital that at

5 months there was still too much undeveloped to further

characterize the dysplasia.

is very happy and somewhat vocal. She says " d " and " m " and

has a happy loud noise that she makes. She can roll over, but she

can not sit independently unless you place her in a sitting

position, and then only if a really good video is on. She will bear

weight on her feet for a couple of minutes; once again, only if

she's well entertained and if someone's hodling her. She can eat

well, but she refluxes an inordinate number of times each day.

I don't think I am adjusting to having a disabled child nearly as

well as it sounds like the rest of you are. I'm angry at the ob/gyn

community for making it seem as if good prenatal care could predict

or prevent this type of outcome. I'm annoyed when I am around

people with healthy, normal babies (particularly those that are

younger than and able to do more). I get very tired of

everyone telling me how great she's coming along as if each new

skill she acquires was developing in a time vacuum. I am also tired

of people telling me about someone they know whose child started out

with a delay and then grew up normal, as if all developmental delays

were the same and 's might someday vanish.

I only just heard of the doctor in Chicago who has diagnosed so many

of your children. I am going to send photos, a medical synopsis,

and the MRI of to him. Maybe I will be less frustrated if I

had a little bit more specific information than has cortical

dysplasia, she'll have seizures, and be learning disabled. That

is all I've been told so far. I also have the experience ( I don't

know if everyone else does) of never being able to get any kind of

answers from a general practitioner about . Anything I ask

warrants the response: that must be related to 's condition.

Anyway, sorry to vent on all of you. I hope I am able to get more

answers and get more used to however will be. She's a sweet,

smiley baby.

Thanks for listening.

-

[Guest guest]

Dear ,

thanks for the letter. It is nice to know that other people are going through

the same thing. sounds like he's doing great. He and are about 1

month apart it sounds like. She was born April '01.

It's great he's using his hands. She's still batting at stuff. Loves her toys,

though.

Thanks for writing.

- Bivens

Re:

,

I certainly understand. My first and only child

was born last May and diagnosed with PMG. I had the

best prenatal care in the world and still nothing I

did or didn't do caused 's condition. My husband

once said having a child with a disability is like

belonging to a club no one else wants to belong to. We

went through the same feelings- it was all I could do

for a while to look at other children and not cry. We

cope by letting be our guide and consider him

to just be on his own time line for things. We rejoice

in the small accomplishments. , comparatively

speaking, is doing remarkably well. She sounds cute as

a button.

The condition is different for each child. has

very little balance for sitting up and has physical

problems with his arms so it is a real effort for him

to crawl and he has seizures but he loves to laugh and

go swinging and swimming and be kissed. He's even

started to be able to use his hands and arms more

since yesterday. Good luck with .

in Houston

[Guest guest]

Dear ,

thanks for the letter. It is nice to know that other people are going through

the same thing. sounds like he's doing great. He and are about 1

month apart it sounds like. She was born April '01.

It's great he's using his hands. She's still batting at stuff. Loves her toys,

though.

Thanks for writing.

- Bivens

Re:

,

I certainly understand. My first and only child

was born last May and diagnosed with PMG. I had the

best prenatal care in the world and still nothing I

did or didn't do caused 's condition. My husband

once said having a child with a disability is like

belonging to a club no one else wants to belong to. We

went through the same feelings- it was all I could do

for a while to look at other children and not cry. We

cope by letting be our guide and consider him

to just be on his own time line for things. We rejoice

in the small accomplishments. , comparatively

speaking, is doing remarkably well. She sounds cute as

a button.

The condition is different for each child. has

very little balance for sitting up and has physical

problems with his arms so it is a real effort for him

to crawl and he has seizures but he loves to laugh and

go swinging and swimming and be kissed. He's even

started to be able to use his hands and arms more

since yesterday. Good luck with .

in Houston

[Guest guest]

Dear ,

thanks for the letter. It is nice to know that other people are going through

the same thing. sounds like he's doing great. He and are about 1

month apart it sounds like. She was born April '01.

It's great he's using his hands. She's still batting at stuff. Loves her toys,

though.

Thanks for writing.

- Bivens

Re:

,

I certainly understand. My first and only child

was born last May and diagnosed with PMG. I had the

best prenatal care in the world and still nothing I

did or didn't do caused 's condition. My husband

once said having a child with a disability is like

belonging to a club no one else wants to belong to. We

went through the same feelings- it was all I could do

for a while to look at other children and not cry. We

cope by letting be our guide and consider him

to just be on his own time line for things. We rejoice

in the small accomplishments. , comparatively

speaking, is doing remarkably well. She sounds cute as

a button.

The condition is different for each child. has

very little balance for sitting up and has physical

problems with his arms so it is a real effort for him

to crawl and he has seizures but he loves to laugh and

go swinging and swimming and be kissed. He's even

started to be able to use his hands and arms more

since yesterday. Good luck with .

in Houston

[Guest guest]

You bet, hang in there. will show you! You can

email me whenever you need an ear:

Lschott@....

Take care. Love to Miss .

in Houston

--- Bivens wrote:

> Dear ,

> thanks for the letter. It is nice to know that

> other people are going through the same thing.

> sounds like he's doing great. He and

> are about 1 month apart it sounds like. She was

> born April '01.

> It's great he's using his hands. She's still

> batting at stuff. Loves her toys, though.

> Thanks for writing.

> - Bivens

> Re:

>

>

> ,

>

> I certainly understand. My first and only child

>

> was born last May and diagnosed with PMG. I had

> the

> best prenatal care in the world and still nothing

> I

> did or didn't do caused 's condition. My

> husband

> once said having a child with a disability is like

> belonging to a club no one else wants to belong

> to. We

> went through the same feelings- it was all I could

> do

> for a while to look at other children and not cry.

> We

> cope by letting be our guide and consider

> him

> to just be on his own time line for things. We

> rejoice

> in the small accomplishments. , comparatively

> speaking, is doing remarkably well. She sounds

> cute as

> a button.

> The condition is different for each child.

> has

> very little balance for sitting up and has

> physical

> problems with his arms so it is a real effort for

> him

> to crawl and he has seizures but he loves to laugh

> and

> go swinging and swimming and be kissed. He's even

> started to be able to use his hands and arms more

> since yesterday. Good luck with .

>

> in Houston

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

You bet, hang in there. will show you! You can

email me whenever you need an ear:

Lschott@....

Take care. Love to Miss .

in Houston

--- Bivens wrote:

> Dear ,

> thanks for the letter. It is nice to know that

> other people are going through the same thing.

> sounds like he's doing great. He and

> are about 1 month apart it sounds like. She was

> born April '01.

> It's great he's using his hands. She's still

> batting at stuff. Loves her toys, though.

> Thanks for writing.

> - Bivens

> Re:

>

>

> ,

>

> I certainly understand. My first and only child

>

> was born last May and diagnosed with PMG. I had

> the

> best prenatal care in the world and still nothing

> I

> did or didn't do caused 's condition. My

> husband

> once said having a child with a disability is like

> belonging to a club no one else wants to belong

> to. We

> went through the same feelings- it was all I could

> do

> for a while to look at other children and not cry.

> We

> cope by letting be our guide and consider

> him

> to just be on his own time line for things. We

> rejoice

> in the small accomplishments. , comparatively

> speaking, is doing remarkably well. She sounds

> cute as

> a button.

> The condition is different for each child.

> has

> very little balance for sitting up and has

> physical

> problems with his arms so it is a real effort for

> him

> to crawl and he has seizures but he loves to laugh

> and

> go swinging and swimming and be kissed. He's even

> started to be able to use his hands and arms more

> since yesterday. Good luck with .

>

> in Houston

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

You bet, hang in there. will show you! You can

email me whenever you need an ear:

Lschott@....

Take care. Love to Miss .

in Houston

--- Bivens wrote:

> Dear ,

> thanks for the letter. It is nice to know that

> other people are going through the same thing.

> sounds like he's doing great. He and

> are about 1 month apart it sounds like. She was

> born April '01.

> It's great he's using his hands. She's still

> batting at stuff. Loves her toys, though.

> Thanks for writing.

> - Bivens

> Re:

>

>

> ,

>

> I certainly understand. My first and only child

>

> was born last May and diagnosed with PMG. I had

> the

> best prenatal care in the world and still nothing

> I

> did or didn't do caused 's condition. My

> husband

> once said having a child with a disability is like

> belonging to a club no one else wants to belong

> to. We

> went through the same feelings- it was all I could

> do

> for a while to look at other children and not cry.

> We

> cope by letting be our guide and consider

> him

> to just be on his own time line for things. We

> rejoice

> in the small accomplishments. , comparatively

> speaking, is doing remarkably well. She sounds

> cute as

> a button.

> The condition is different for each child.

> has

> very little balance for sitting up and has

> physical

> problems with his arms so it is a real effort for

> him

> to crawl and he has seizures but he loves to laugh

> and

> go swinging and swimming and be kissed. He's even

> started to be able to use his hands and arms more

> since yesterday. Good luck with .

>

> in Houston

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Dear ,

It is true, that while there is life, there is hope. I hope and pray that

your beautiful daughter returns to consciousness soon and recovers. What a

tragedy.

May you find the strength to endure this most challenging time.

Bertha

[Guest guest]

,

I am so sorry to hear about your daughter. I remind myself everyday as we

struggle with this horrible disease (LBD), that there are others out there

who are dealing with greater heart wrenching tragedies. May God give

you strength.

Debbie Curtis

[Guest guest]

In a message dated 7/27/02 8:44:54 PM Central Daylight Time,

emersonk@... writes:

> I often kick myself for not doing more when my parents visited me last

> September. If I knew then that would likely be my last visit with them

> here I would have done this, I would have done that

, you can NOT flaggelate yourself for this!! It seems that nearly

everything in life is fraught with " what ifs. " We simply can't live that

way.

" Or, is it worse for someone like me who isn't there who misses the good days

in the midst of all the bad? " This former Coast Guard Family Programs

Administrator says that helping our Coasties deal with this, when they

couldn't make a sick parent their " dependent " and couldn't get a HUMS, was

one of the most painful things in my job. No, regs won't allow in most

cases, but the pain, the horror for those who would never again see their

parent in a " decent space, " was awful. LBD may or may not progress rapidly,

and then may " back up. " I hope against hope that " backing up " will happen

and give you some additional time with your mom.

As an officer you do have the additional tug of having to keep the stiff

upper lip. The enlisted folks are more allowed to acknowledge their

" humanness. " My old submariner, though, would allow it for both. I wish you

fair winds . . .

Cheryl

[Guest guest]

In a message dated 7/27/02 8:44:43 PM Central Daylight Time,

emersonk@... writes:

> From the Mighty Warship...

You go, Sailor! And thank you for your sacrifices!! They are especially

meaningful in the face of what you have to deal with.

I agree that your overnights with Mom were a good thing. Something to be

added to the war chest for caregiving that we/the " profession " will have to

deal with.

I am so glad your leave was so successful. Don't know that I would call it

" happy, " but definitely successful. Your poor dad. As a spouse, I really do

feel for him. If he has a computer and you think he would benefit from us,

just send me his address - I'd be glad to set him up.

Cheryl

[Guest guest]

Even though your reply was for Cheryl, I wanted to reply to you. You

sound like such a wonderful, caring person. Being so involved in your

moms care, even when you are not physically near her is so impressive.

I can appreciate, as a daughter, how much you love your mom by your

actions and words. Your mom and dad are lucky to have such a caring and

wise daughter. Our country is also lucky to have you as one of the

service people chosen to defend us!! Thank you!!

Sandie

Des Moines, IA

[Guest guest]

Again, thank you for sharing your stories and feelings. Please, please

keep sharing and letting me know how you are doing. I truly enjoy

getting to know people more in this group....we have truly been blessed

by your being in this group. Keep up the prayers as there is much power

in prayer. I will be praying for you and especially your new journey in

deployment.

Sandie

Des Moines, IA

[Guest guest]

Hmmm, I will have to check my " wife " contract, I must have missed that part

about the " taking care of sister-in-law's at sea " part!! While you are away

at sea, I would be happy to mail you postings!

> Re: Back from home...

>

> Dear ,

> I know that my sister has already replied to you, but I had to say

> something too. It's almost as if you were one of my sisters talking about

>

> our mum when you describe the time you had with her when you were home. I

> couldn't believe it.

>

> Warmest wishes to you and to your mother too.

>

>

>

>

>

>

>

>

[Guest guest]

Hey, I will gladly post my address to everyone...mail call is the best part

of the day out here. During my deployment last year I had e-mail the entire

time so I didn't get much in the way of real mail. Now that I think of it,

lack of mail was another sign I missed with my Mom...when I went to Officer

Candidate School four years ago she wrote me several letters- in her

beautiful handwriting on her pretty stationary. I can't recall the last

time she sent me a card or presents on her own. My birthday 1999? I don't

know when my Dad started covering for her, buying the gifts and other things

(like things for my care packages) and had my Mami sign the cards. It is

amazing how something so simple can tell you so much in hindsight.

Sigh....

RE:

Hmmm, I will have to check my " wife " contract, I must have missed that part

about the " taking care of sister-in-law's at sea " part!! While you are away

at sea, I would be happy to mail you postings!

[Guest guest]

,

I know this has nothing to do with LBD, but ... when those boys are ready for

driving lessons, they will also have a sister to teach them...

Now, to contribute something on topic: is there anyone out there concerned

with getting a LO to stop driving?

Bertha