Re: Ethan update sad... Question re s Hopkins

May 4, 2004

Oh - How my heart breaks to hear your sad news. I will pray that

you will God will give you the peace that only He can give during this

heartbreaking time. Please, please stay on our list.........you are part

of our network of parents who need parents. Although we may not be of

aid to you, your knowledge and experience can help us all. I hope that

doesn't sound selfish, but I just feel you can help other parents cope

with the difficulties of caring for a special needs child. I will

continue to pray for you and your family.

Love,

Kathy - Mom to

On Tue, 4 May 2004 16:42:44 -0400 " Atyeo "

writes:

> Nicky -

>

> I am so sorry it has taken me so long to reply. To our sadness,

> our

> son Ethan (14 months old) fell asleep in death (I'm a big Bible

> reader

> and that is the way its often time referred to). Since early in is

> life

> the doctors and medical staff worked franticly to figure out what

> had

> gone wrong with him. Since his birth he had difficultly keeping

> himself

> oxygenated and had allot of trouble with feeding. His seizures ran

> ramped causing him to turn blue around the mouth with many. We spent

> 7

> or 8 months in the hospital, most of that time in the NICU or PICU.

> We

> tried the gambit of drugs, ACTH being the only one to have helped.

> He

> was unable to do much, but cry when he was in pain and it was so

> nice to

> hear him make a sound. He was such a special guy, and I know his

> life

> was short but he hung in there for a year longer then most people

> expected. And due to almost living in the NICU for months I learned

> to

> be extremely happy for each day of life. I hope you don't mind me

> sharing this; it's extremely helpful to me. The diet seemed to help

> control the amount of seizure activity but his underlying condition

> (most likely something metabolic, which means genetic) was just to

> server. We loved and cared for our son the best we could and I

> truly

> believe we can see him in the near future and that helps with

> coping.

> He, like all of our Kid's was a special little person.

>

> I was unable to locate the dietitian, form children's hospital

> in

> Philly but if you called then main number, and asked

> for

> the ketogenic diet department they could probably help you out.

>

> I will remain apart of this list, because of all the help and

> support

> that was given to us over the last 9 months and I can't bear to

> loose to

> contact on all the updates. Thanks to everyone who read, and helped

> with our situation.

>

> Regards,

>

> , mom to Ethan

>

> Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 4, 2004

Oh - How my heart breaks to hear your sad news. I will pray that

you will God will give you the peace that only He can give during this

heartbreaking time. Please, please stay on our list.........you are part

of our network of parents who need parents. Although we may not be of

aid to you, your knowledge and experience can help us all. I hope that

doesn't sound selfish, but I just feel you can help other parents cope

with the difficulties of caring for a special needs child. I will

continue to pray for you and your family.

Love,

Kathy - Mom to

On Tue, 4 May 2004 16:42:44 -0400 " Atyeo "

writes:

> Nicky -

>

> I am so sorry it has taken me so long to reply. To our sadness,

> our

> son Ethan (14 months old) fell asleep in death (I'm a big Bible

> reader

> and that is the way its often time referred to). Since early in is

> life

> the doctors and medical staff worked franticly to figure out what

> had

> gone wrong with him. Since his birth he had difficultly keeping

> himself

> oxygenated and had allot of trouble with feeding. His seizures ran

> ramped causing him to turn blue around the mouth with many. We spent

> 7

> or 8 months in the hospital, most of that time in the NICU or PICU.

> We

> tried the gambit of drugs, ACTH being the only one to have helped.

> He

> was unable to do much, but cry when he was in pain and it was so

> nice to

> hear him make a sound. He was such a special guy, and I know his

> life

> was short but he hung in there for a year longer then most people

> expected. And due to almost living in the NICU for months I learned

> to

> be extremely happy for each day of life. I hope you don't mind me

> sharing this; it's extremely helpful to me. The diet seemed to help

> control the amount of seizure activity but his underlying condition

> (most likely something metabolic, which means genetic) was just to

> server. We loved and cared for our son the best we could and I

> truly

> believe we can see him in the near future and that helps with

> coping.

> He, like all of our Kid's was a special little person.

>

> I was unable to locate the dietitian, form children's hospital

> in

> Philly but if you called then main number, and asked

> for

> the ketogenic diet department they could probably help you out.

>

> I will remain apart of this list, because of all the help and

> support

> that was given to us over the last 9 months and I can't bear to

> loose to

> contact on all the updates. Thanks to everyone who read, and helped

> with our situation.

>

> Regards,

>

> , mom to Ethan

>

> Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 4, 2004

Oh - How my heart breaks to hear your sad news. I will pray that

you will God will give you the peace that only He can give during this

heartbreaking time. Please, please stay on our list.........you are part

of our network of parents who need parents. Although we may not be of

aid to you, your knowledge and experience can help us all. I hope that

doesn't sound selfish, but I just feel you can help other parents cope

with the difficulties of caring for a special needs child. I will

continue to pray for you and your family.

Love,

Kathy - Mom to

On Tue, 4 May 2004 16:42:44 -0400 " Atyeo "

writes:

> Nicky -

>

> I am so sorry it has taken me so long to reply. To our sadness,

> our

> son Ethan (14 months old) fell asleep in death (I'm a big Bible

> reader

> and that is the way its often time referred to). Since early in is

> life

> the doctors and medical staff worked franticly to figure out what

> had

> gone wrong with him. Since his birth he had difficultly keeping

> himself

> oxygenated and had allot of trouble with feeding. His seizures ran

> ramped causing him to turn blue around the mouth with many. We spent

> 7

> or 8 months in the hospital, most of that time in the NICU or PICU.

> We

> tried the gambit of drugs, ACTH being the only one to have helped.

> He

> was unable to do much, but cry when he was in pain and it was so

> nice to

> hear him make a sound. He was such a special guy, and I know his

> life

> was short but he hung in there for a year longer then most people

> expected. And due to almost living in the NICU for months I learned

> to

> be extremely happy for each day of life. I hope you don't mind me

> sharing this; it's extremely helpful to me. The diet seemed to help

> control the amount of seizure activity but his underlying condition

> (most likely something metabolic, which means genetic) was just to

> server. We loved and cared for our son the best we could and I

> truly

> believe we can see him in the near future and that helps with

> coping.

> He, like all of our Kid's was a special little person.

>

> I was unable to locate the dietitian, form children's hospital

> in

> Philly but if you called then main number, and asked

> for

> the ketogenic diet department they could probably help you out.

>

> I will remain apart of this list, because of all the help and

> support

> that was given to us over the last 9 months and I can't bear to

> loose to

> contact on all the updates. Thanks to everyone who read, and helped

> with our situation.

>

> Regards,

>

> , mom to Ethan

>

> Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 4, 2004

,

You and your family are in my prayers. So sorry for your loss. I

bet he was a special little guy.

With love,

Emma.

Mum to .

> Nicky -

>

> I am so sorry it has taken me so long to reply. To our sadness,

our

> son Ethan (14 months old) fell asleep in death (I'm a big Bible

reader

> and that is the way its often time referred to). Since early in is

life

> the doctors and medical staff worked franticly to figure out what

had

> gone wrong with him. Since his birth he had difficultly keeping

himself

> oxygenated and had allot of trouble with feeding. His seizures ran

> ramped causing him to turn blue around the mouth with many. We

spent 7

> or 8 months in the hospital, most of that time in the NICU or

PICU. We

> tried the gambit of drugs, ACTH being the only one to have helped.

He

> was unable to do much, but cry when he was in pain and it was so

nice to

> hear him make a sound. He was such a special guy, and I know his

life

> was short but he hung in there for a year longer then most people

> expected. And due to almost living in the NICU for months I learned

to

> be extremely happy for each day of life. I hope you don't mind me

> sharing this; it's extremely helpful to me. The diet seemed to help

> control the amount of seizure activity but his underlying condition

> (most likely something metabolic, which means genetic) was just to

> server. We loved and cared for our son the best we could and I

truly

> believe we can see him in the near future and that helps with

coping.

> He, like all of our Kid's was a special little person.

>

> I was unable to locate the dietitian, form children's

hospital in

> Philly but if you called then main number, and asked

for

> the ketogenic diet department they could probably help you out.

>

> I will remain apart of this list, because of all the help and

support

> that was given to us over the last 9 months and I can't bear to

loose to

> contact on all the updates. Thanks to everyone who read, and helped

> with our situation.

>

> Regards,

>

> , mom to Ethan

>

> Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 4, 2004

, I am so sorry for your loss.

Satnam, mom to Kristan, 17 months

Keto kid since August 2003

> Nicky -

>

> I am so sorry it has taken me so long to reply. To our sadness,

our

> son Ethan (14 months old) fell asleep in death (I'm a big Bible

reader

> and that is the way its often time referred to). Since early in is

life

> the doctors and medical staff worked franticly to figure out what

had

> gone wrong with him. Since his birth he had difficultly keeping

himself

> oxygenated and had allot of trouble with feeding. His seizures ran

> ramped causing him to turn blue around the mouth with many. We

spent 7

> or 8 months in the hospital, most of that time in the NICU or

PICU. We

> tried the gambit of drugs, ACTH being the only one to have helped.

He

> was unable to do much, but cry when he was in pain and it was so

nice to

> hear him make a sound. He was such a special guy, and I know his

life

> was short but he hung in there for a year longer then most people

> expected. And due to almost living in the NICU for months I learned

to

> be extremely happy for each day of life. I hope you don't mind me

> sharing this; it's extremely helpful to me. The diet seemed to help

> control the amount of seizure activity but his underlying condition

> (most likely something metabolic, which means genetic) was just to

> server. We loved and cared for our son the best we could and I

truly

> believe we can see him in the near future and that helps with

coping.

> He, like all of our Kid's was a special little person.

>

> I was unable to locate the dietitian, form children's

hospital in

> Philly but if you called then main number, and asked

for

> the ketogenic diet department they could probably help you out.

>

> I will remain apart of this list, because of all the help and

support

> that was given to us over the last 9 months and I can't bear to

loose to

> contact on all the updates. Thanks to everyone who read, and helped

> with our situation.

>

> Regards,

>

> , mom to Ethan

>

> Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 4, 2004

,

I am, truly sorry for what you have to go through. Over the past 2 days my

son's seizures have intensified as well, infact his mouth turns blue too. I

will cherish whatever little time I have left with my son who is

deteriorating, and I can only say I hope our little babies will suffer no

longer when they are in heaven.

Love

> Nicky -

>

> I am so sorry it has taken me so long to reply. To our sadness,

our

> son Ethan (14 months old) fell asleep in death (I'm a big Bible

reader

> and that is the way its often time referred to). Since early in is

life

> the doctors and medical staff worked franticly to figure out what

had

> gone wrong with him. Since his birth he had difficultly keeping

himself

> oxygenated and had allot of trouble with feeding. His seizures ran

> ramped causing him to turn blue around the mouth with many. We

spent 7

> or 8 months in the hospital, most of that time in the NICU or

PICU. We

> tried the gambit of drugs, ACTH being the only one to have helped.

He

> was unable to do much, but cry when he was in pain and it was so

nice to

> hear him make a sound. He was such a special guy, and I know his

life

> was short but he hung in there for a year longer then most people

> expected. And due to almost living in the NICU for months I learned

to

> be extremely happy for each day of life. I hope you don't mind me

> sharing this; it's extremely helpful to me. The diet seemed to help

> control the amount of seizure activity but his underlying condition

> (most likely something metabolic, which means genetic) was just to

> server. We loved and cared for our son the best we could and I

truly

> believe we can see him in the near future and that helps with

coping.

> He, like all of our Kid's was a special little person.

>

> I was unable to locate the dietitian, form children's

hospital in

> Philly but if you called then main number, and asked

for

> the ketogenic diet department they could probably help you out.

>

> I will remain apart of this list, because of all the help and

support

> that was given to us over the last 9 months and I can't bear to

loose to

> contact on all the updates. Thanks to everyone who read, and helped

> with our situation.

>

> Regards,

>

> , mom to Ethan

>

> Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 4, 2004

,

I'm so sorry to hear of your sad loss.

I'm sure Ethan felt how much you loved

and cared for him.

Saro

May 5, 2004

-

If there is any information I can offer you, please feel free to ask.

We went down so many different roads with Ethan's seizures that I feel I

may have some information to offer someone.

Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 5, 2004

-

If there is any information I can offer you, please feel free to ask.

We went down so many different roads with Ethan's seizures that I feel I

may have some information to offer someone.

Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

May 5, 2004

-

If there is any information I can offer you, please feel free to ask.

We went down so many different roads with Ethan's seizures that I feel I

may have some information to offer someone.

Re: Question re s Hopkins

>

> Thanks ,

> any info you can give me would be helpful,

> Nicky

>

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