Re: Jillian passed away March 24

[Guest guest]

I am soo very sorry for your loss.

I can’t even imagine what you are going through.

You are all in our prayers.

HYPERLINK " http://www.danielspranger.com " www.danielspranger.com

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of brztml

Sent: Monday, April 07, 2008 11:24 PM

To: polymicrogyria

Subject: Jillian passed away March 24

Hi everyone,

I am rejoining the group after several months of serious illness with

Jillian (our 3y.o.). She died 2 weeks ago after her seizures got the

better of her and caused her to have major respiratory distress over

the course of several months. Dr Dobyns had predicted this course

when we met with him in Sept. 05. He was right on target. He

basically told us Jillian had PMG, but she also had other things not

associated with PMG so she was far more seroiusly DD than we had

thought. Her basic functioning was at about a 3 month old level.

About 1 1/2 years ago, she stopped doing the few things she could do

(laugh, smile, play a few simple games). Her lungs became worse, as

did seizures. My firm belief is that the seizures were creating more

damage because her respiratory system got worse. In Sept. 07, she

was hospitalized with Status Epilepticus, but came out with severe

breathing difficulty. She was never the same after that. Then, she

went back in in Jan. 08 and at that point, it was discussed that we

had no more options, so Hospice was called in in Feb. She had a very

bad seizure 2 weeks before she died and I think that was the catalyst

for her last 2 weeks being so difficult. Mainly, she seized, then

couldn't breathe. This cycled until she finally stopped breathing

Easter night, recovered for a few hours, then died several hours

later. She was such a beautiful child and I have been amazed at the

# of people she touched (many we don't even know). Thank you for

letting me share my story. We all have so much in common, and I am

thankful that during the darkest days that will lay ahead for our

family, that we know there are families out there who understand our

pain and suffering. Many blessings to each of you. My prayers to

all of you. -- Folsom

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[Guest guest]

Thank you so much for sharing your story with all of us. My thoughts and

prayers are with you.

> Hi everyone,

> I am rejoining the group after several months of serious illness with

> Jillian (our 3y.o.). She died 2 weeks ago after her seizures got the

> better of her and caused her to have major respiratory distress over

> the course of several months. Dr Dobyns had predicted this course

> when we met with him in Sept. 05. He was right on target. He

> basically told us Jillian had PMG, but she also had other things not

> associated with PMG so she was far more seroiusly DD than we had

> thought. Her basic functioning was at about a 3 month old level.

> About 1 1/2 years ago, she stopped doing the few things she could do

> (laugh, smile, play a few simple games). Her lungs became worse, as

> did seizures. My firm belief is that the seizures were creating more

> damage because her respiratory system got worse. In Sept. 07, she

> was hospitalized with Status Epilepticus, but came out with severe

> breathing difficulty. She was never the same after that. Then, she

> went back in in Jan. 08 and at that point, it was discussed that we

> had no more options, so Hospice was called in in Feb. She had a very

> bad seizure 2 weeks before she died and I think that was the catalyst

> for her last 2 weeks being so difficult. Mainly, she seized, then

> couldn't breathe. This cycled until she finally stopped breathing

> Easter night, recovered for a few hours, then died several hours

> later. She was such a beautiful child and I have been amazed at the

> # of people she touched (many we don't even know). Thank you for

> letting me share my story. We all have so much in common, and I am

> thankful that during the darkest days that will lay ahead for our

> family, that we know there are families out there who understand our

> pain and suffering. Many blessings to each of you. My prayers to

> all of you. -- Folsom

>

>

>

[Guest guest]

Dear and family,

Please know that we are holding your family close in our thoughts and

prayers. May happy memories of Jillian bring you peace.......

With love and prayers,

Krista and family

[Guest guest]

,

We are so sorry to hear of Jillian's passing. I am sure she must have

been an angel and we want you to know you are in our thoughts and

prayers. How appropriate that such an angel should go home to heaven

on Easter. Thankyou for sharing Jillian with us and though we are far

away in terms of miles, I hope that you can feel the hugs.

May God give you peace,

Joanie & Steve (Max)

[Guest guest]

,

I am so sorry for your loss. I hope peace and grace for you and your

family during this nearly unbearable time.

Love and Blessings,

[Guest guest]

Hi Folsom Family, I was so sorry to hear of the sad loss of Jillian, although i

can only imagine what your going through your loss tore through my heart. it is

something that we all dread and fear.

Please stay in touch and let us know how you are all doing.

may the angels watch over you and your family and your happy memories of

Jillian give you comfort in your times of need.

mum to 7yrs PMG/LISS G-tube, and Epilepsy

To: polymicrogyria@...: brztml@...: Tue, 8 Apr 2008

02:24:17 +0000Subject: Jillian passed away March 24

Hi everyone,I am rejoining the group after several months of serious illness

with Jillian (our 3y.o.). She died 2 weeks ago after her seizures got the better

of her and caused her to have major respiratory distress over the course of

several months. Dr Dobyns had predicted this course when we met with him in

Sept. 05. He was right on target. He basically told us Jillian had PMG, but she

also had other things not associated with PMG so she was far more seroiusly DD

than we had thought. Her basic functioning was at about a 3 month old level.

About 1 1/2 years ago, she stopped doing the few things she could do (laugh,

smile, play a few simple games). Her lungs became worse, as did seizures. My

firm belief is that the seizures were creating more damage because her

respiratory system got worse. In Sept. 07, she was hospitalized with Status

Epilepticus, but came out with severe breathing difficulty. She was never the

same after that. Then, she went back in in Jan. 08 and at that point, it was

discussed that we had no more options, so Hospice was called in in Feb. She had

a very bad seizure 2 weeks before she died and I think that was the catalyst for

her last 2 weeks being so difficult. Mainly, she seized, then couldn't breathe.

This cycled until she finally stopped breathing Easter night, recovered for a

few hours, then died several hours later. She was such a beautiful child and I

have been amazed at the # of people she touched (many we don't even know). Thank

you for letting me share my story. We all have so much in common, and I am

thankful that during the darkest days that will lay ahead for our family, that

we know there are families out there who understand our pain and suffering. Many

blessings to each of you. My prayers to all of you. -- Folsom

_________________________________________________________________

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[Guest guest]

I am very sorry to hear of your loss . Thank you for posting

the photo of your precious children on the site, Jillian is so very

beautiful.

Sending many hugs and many blessings to your family during this

difficult time.

Freeman ('s mom)

>

> Hi everyone,

> I am rejoining the group after several months of serious illness

with

> Jillian (our 3y.o.). She died 2 weeks ago after her seizures got

the

> better of her and caused her to have major respiratory distress

over

> the course of several months. Dr Dobyns had predicted this course

> when we met with him in Sept. 05. He was right on target. He

> basically told us Jillian had PMG, but she also had other things

not

> associated with PMG so she was far more seroiusly DD than we had

> thought. Her basic functioning was at about a 3 month old level.

> About 1 1/2 years ago, she stopped doing the few things she could

do

> (laugh, smile, play a few simple games). Her lungs became worse,

as

> did seizures. My firm belief is that the seizures were creating

more

> damage because her respiratory system got worse. In Sept. 07, she

> was hospitalized with Status Epilepticus, but came out with severe

> breathing difficulty. She was never the same after that. Then,

she

> went back in in Jan. 08 and at that point, it was discussed that

we

> had no more options, so Hospice was called in in Feb. She had a

very

> bad seizure 2 weeks before she died and I think that was the

catalyst

> for her last 2 weeks being so difficult. Mainly, she seized, then

> couldn't breathe. This cycled until she finally stopped breathing

> Easter night, recovered for a few hours, then died several hours

> later. She was such a beautiful child and I have been amazed at

the

> # of people she touched (many we don't even know). Thank you for

> letting me share my story. We all have so much in common, and I

am

> thankful that during the darkest days that will lay ahead for our

> family, that we know there are families out there who understand

our

> pain and suffering. Many blessings to each of you. My prayers to

> all of you. -- Folsom

>

[Guest guest]

, my heart aches for you and your family. We all wish we

could give you a big hug. I can not begin to imagine what you are

going through. I can guess you are trying to pick up the pieces for

the rest of the family though. I will lift you up daily in prayer,

and think of you often. Your support family is just a click away.

Your children are adorable, we are so blessed to be called mom,

aren't we. Cole's mom,

> >

> > Hi everyone,

> > I am rejoining the group after several months of serious illness

> with

> > Jillian (our 3y.o.). She died 2 weeks ago after her seizures

got

> the

> > better of her and caused her to have major respiratory distress

> over

> > the course of several months. Dr Dobyns had predicted this

course

> > when we met with him in Sept. 05. He was right on target. He

> > basically told us Jillian had PMG, but she also had other things

> not

> > associated with PMG so she was far more seroiusly DD than we had

> > thought. Her basic functioning was at about a 3 month old

level.

> > About 1 1/2 years ago, she stopped doing the few things she

could

> do

> > (laugh, smile, play a few simple games). Her lungs became

worse,

> as

> > did seizures. My firm belief is that the seizures were creating

> more

> > damage because her respiratory system got worse. In Sept. 07,

she

> > was hospitalized with Status Epilepticus, but came out with

severe

> > breathing difficulty. She was never the same after that. Then,

> she

> > went back in in Jan. 08 and at that point, it was discussed that

> we

> > had no more options, so Hospice was called in in Feb. She had a

> very

> > bad seizure 2 weeks before she died and I think that was the

> catalyst

> > for her last 2 weeks being so difficult. Mainly, she seized,

then

> > couldn't breathe. This cycled until she finally stopped

breathing

> > Easter night, recovered for a few hours, then died several hours

> > later. She was such a beautiful child and I have been amazed at

> the

> > # of people she touched (many we don't even know). Thank you

for

> > letting me share my story. We all have so much in common, and I

> am

> > thankful that during the darkest days that will lay ahead for

our

> > family, that we know there are families out there who understand

> our

> > pain and suffering. Many blessings to each of you. My prayers

to

> > all of you. -- Folsom

> >

>

[Guest guest]

-

My thoughts and prayers are for you and your whole family... What you have

exerienced is my biggest fear with our grandson Lukas. I can not imagine the

pain you are going through.

My thoughts are with you everyday.

Kim

(grandmother of Lukas 15 months/PGM

Jillian passed away March 24

Hi everyone,

I am rejoining the group after several months of serious illness with

Jillian (our 3y.o.). She died 2 weeks ago after her seizures got the

better of her and caused her to have major respiratory distress over

the course of several months. Dr Dobyns had predicted this course

when we met with him in Sept. 05. He was right on target. He

basically told us Jillian had PMG, but she also had other things not

associated with PMG so she was far more seroiusly DD than we had

thought. Her basic functioning was at about a 3 month old level.

About 1 1/2 years ago, she stopped doing the few things she could do

(laugh, smile, play a few simple games). Her lungs became worse, as

did seizures. My firm belief is that the seizures were creating more

damage because her respiratory system got worse. In Sept. 07, she

was hospitalized with Status Epilepticus, but came out with severe

breathing difficulty. She was never the same after that. Then, she

went back in in Jan. 08 and at that point, it was discussed that we

had no more options, so Hospice was called in in Feb. She had a very

bad seizure 2 weeks before she died and I think that was the catalyst

for her last 2 weeks being so difficult. Mainly, she seized, then

couldn't breathe. This cycled until she finally stopped breathing

Easter night, recovered for a few hours, then died several hours

later. She was such a beautiful child and I have been amazed at the

# of people she touched (many we don't even know). Thank you for

letting me share my story. We all have so much in common, and I am

thankful that during the darkest days that will lay ahead for our

family, that we know there are families out there who understand our

pain and suffering. Many blessings to each of you. My prayers to

all of you. -- Folsom

__________________________________________________

[Guest guest]

It is nice to have you back and I am truly sorry for your loss. I just cannot

imagine how you must feel! It was nice reading your story and knowing that you

did have 3 years with what sounds like a wonderful child! My prayers are with

you and your family.

Penni

brztml wrote:

Hi everyone,

I am rejoining the group after several months of serious illness with

Jillian (our 3y.o.). She died 2 weeks ago after her seizures got the

better of her and caused her to have major respiratory distress over

the course of several months. Dr Dobyns had predicted this course

when we met with him in Sept. 05. He was right on target. He

basically told us Jillian had PMG, but she also had other things not

associated with PMG so she was far more seroiusly DD than we had

thought. Her basic functioning was at about a 3 month old level.

About 1 1/2 years ago, she stopped doing the few things she could do

(laugh, smile, play a few simple games). Her lungs became worse, as

did seizures. My firm belief is that the seizures were creating more

damage because her respiratory system got worse. In Sept. 07, she

was hospitalized with Status Epilepticus, but came out with severe

breathing difficulty. She was never the same after that. Then, she

went back in in Jan. 08 and at that point, it was discussed that we

had no more options, so Hospice was called in in Feb. She had a very

bad seizure 2 weeks before she died and I think that was the catalyst

for her last 2 weeks being so difficult. Mainly, she seized, then

couldn't breathe. This cycled until she finally stopped breathing

Easter night, recovered for a few hours, then died several hours

later. She was such a beautiful child and I have been amazed at the

# of people she touched (many we don't even know). Thank you for

letting me share my story. We all have so much in common, and I am

thankful that during the darkest days that will lay ahead for our

family, that we know there are families out there who understand our

pain and suffering. Many blessings to each of you. My prayers to

all of you. -- Folsom

------------------------------------