update

[Guest guest]

,

I have just gone through most of the messages posted through March/April and am now familiar with s story. Finally, you seem to be getting answers (?)....I am glad they were able to release you last week.

I agree with you and Carmell about seeking out an orthopaedic specialist that is familiar with this complicated procedure. If finding someone you trust turns out to be a challenge, consider a Shriners Hospital. I will also keep my eyes open, and will do a little research on NF1 when I get home tonight.

Today is Olivias 2nd to last day of school, and she wants me to hang out with her all day at school. This should be fun!

, I can only imagine, your fear, anxiety, frustration. I wish I could offer some magic advice or medicine....

Olivia and I will send prayers your way, and please keep us updated.

Sincerely,

HRH

Update

Hi everyone

had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things.

[Guest guest]

Hi ,

I'm glad to hear got through the biopsy ok. I can't remember where you guys are from. I may be just loosing it, but I thought that Dr. Crawford in Cinncinati worked with neurofibromatosis, or had at least researched it extensively. He might have some recommendations within the surgical community. You might ask Gail. Dr. Crawford works with (Veptr). Anyway. I'll be praying you guys find a wonderfully qualified surgeon to help .

Shellie Kezar <hogmech1@...> wrote:

Hi everyone

had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even

through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as and has never dealt with this type of tumor or disease so wish us luck in getting

Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things.

Discover Stay in touch with email, IM, photo sharing more. Check it out!

[Guest guest]

Thanks Shellie

We are in VA. Thanks again

Re: Update

Hi ,

I'm glad to hear got through the biopsy ok. I can't remember where you guys are from. I may be just loosing it, but I thought that Dr. Crawford in Cinncinati worked with neurofibromatosis, or had at least researched it extensively. He might have some recommendations within the surgical community. You might ask Gail. Dr. Crawford works with (Veptr). Anyway. I'll be praying you guys find a wonderfully qualified surgeon to help .

Shellie Kezar <hogmech1@...> wrote:

Hi everyone

had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things.

Discover Stay in touch with email, IM, photo sharing & more. Check it out!

[Guest guest]

Thanks everyone we are taking a much needed family vacation before we start all of the treatment options for we can't get in with Shriner's until the 21st and then the other Doctor for the tumor and NF1 isn't until August 2nd so we are heading to Flordia this evening I will be in touch when I can

Update

Hi everyone

had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things.

[Guest guest]

Hello , As a grandmother of an sma child

myself I will keep your grandma in my thoughts and

prayers. One thing I would like to add is that all

people should buy organic dairy products because all

other milk products contain added BGH which is a

growth hormone so cows will produce more milk. They

are now linking BGH additives to breast and prostate

cancers. Organic may be alittle more money but it is

well worth it.

--- " Milinovich (Missy er) "

<kinsintha@...> wrote:

> Hello all! I just wanted to take a quick minute to

> say hello again and

> let you all know what is going on with me. I went

> to the FSMA

> conference a few weeks ago and it was a GREAT time!

> I can't wait to

> see everyone again next year. I leave for NY on

> Sunday to compete for

> the Ms Wheelchair America title so keep your fingers

> crossed!

>

> As a side note, my Grandma is currently living with

> stage-4 breast

> cancer and is not doing very well. If you could

> keep her in your

> thoughts & prayers; I'd appreciate it. She is only

> 64 and we are very

> close.

>

> As always, please feel free to ask me any questions

> you may have; I'm

> not shy!

>

> *hugs*

> Milinovich

> Ms Wheelchair Ohio 2005

>

>

>

__________________________________________________

[Guest guest]

If you're not using a different mix of tea then it must be discoloration

from the yeast. The hole may be from excessive CO2 being produced by higher

yeast activity as well.

Nothing real unusual going on though from what I can tell here. Brew on!

- Len

update

Well from my first batch I made another and it went down the drain....

The scoby wouldnt grow more the 1/8 inch think and after 10 days it

just didnt smell good..... i can explain it but it didnt have that

aroma the first one did..... so i tasted it and SHOOOOOO..... there was

no mold on it but it tasted rotted.

Tina Renea send me another scoby and in 4 days that scoby was over 1/4

thick.... i have it set up high so i wont jar it ( just to note the

other were out of easy range too).... but standing on the ground

looking up it looks thick around the edges but doesnt look to have

anything in the middle.... like a donut scoby.

I havent tasted it yet but the scoby looks very healthy.... it looks

yellow and spongey

The other one i had stayed white and 1/8 inch thick.... any idea why?

[Guest guest]

That's awesome news on !!! I am so glad to hear she is doing good and happily at home. What a cutie!"Gail M. Kimball" <gmkimball@...> wrote:

I know some of you subscribe to 's CarePage - so you may read this more than once.

had been saying since Tuesday that she wanted to go home, but I felt more comfortable staying overnight at least. Of course, staying overnight does NOT mean sleeping overnight. kept waking up moaning, which woke me up. So I would put in a movie for her and try to sleep again. By 4:00am we gave up on that and just watched Playhouse Disney.

refused to take any pain medication, and the one time the nurse did give it to her, she threw it up. So we did not revisit that. She kept saying she did not want it. She was running a low-grade fever most of Tuesday night and Wednesday. We wanted her to take Tylenol just for that, but no go.

She was released with instructions for me to call if her fever went up, if she couldn’t keep anything down, if she fell etc. was SO happy to get home!

She slept very well last night. I did manage to get a small bit of Tylenol into her by spiking her juice. No fever today! When I went in to check on her this morning, she was sitting on the edge of her bed and said “Watch this mom!” whereby she proceeded to walk across her room. She then took my hand and said “let’s go downstairs!” and walked downstairs. She is definitely happier at home!

I anticipate her recovery to go very smoothly and she will have her first visitors tomorrow – her friend will be coming by. She also received an envelope in the mail from her friends at preschool – she was very excited! She kept saying “My friends from preschool remembered me!”

Gail******************************************************************************************"Everyone has a photographic memory...some of us just don't have any film."Jim & Abercrombie

FareChase - Search multiple travel sites in one click.

[Guest guest]

Great going and Gail. I love hearing about another little girl with loads of opinions and determination.

bert"Gail M. Kimball" <gmkimball@...> wrote:

I know some of you subscribe to 's CarePage - so you may read this more than once.

had been saying since Tuesday that she wanted to go home, but I felt more comfortable staying overnight at least. Of course, staying overnight does NOT mean sleeping overnight. kept waking up moaning, which woke me up. So I would put in a movie for her and try to sleep again. By 4:00am we gave up on that and just watched Playhouse Disney.

refused to take any pain medication, and the one time the nurse did give it to her, she threw it up. So we did not revisit that. She kept saying she did not want it. She was running a low-grade fever most of Tuesday night and Wednesday. We wanted her to take Tylenol just for that, but no go.

She was released with instructions for me to call if her fever went up, if she couldn’t keep anything down, if she fell etc. was SO happy to get home!

She slept very well last night. I did manage to get a small bit of Tylenol into her by spiking her juice. No fever today! When I went in to check on her this morning, she was sitting on the edge of her bed and said “Watch this mom!” whereby she proceeded to walk across her room. She then took my hand and said “let’s go downstairs!” and walked downstairs. She is definitely happier at home!

I anticipate her recovery to go very smoothly and she will have her first visitors tomorrow – her friend will be coming by. She also received an envelope in the mail from her friends at preschool – she was very excited! She kept saying “My friends from preschool remembered me!”

Gail******************************************************************************************"Everyone has a photographic memory...some of us just don't have any film."

FareChase - Search multiple travel sites in one click.

[Guest guest]

"Gail M. Kimball" <gmkimball@...> wrote:

I know some of you subscribe to 's CarePage - so you may read this more than once.

had been saying since Tuesday that she wanted to go home, but I felt more comfortable staying overnight at least. Of course, staying overnight does NOT mean sleeping overnight. kept waking up moaning, which woke me up. So I would put in a movie for her and try to sleep again. By 4:00am we gave up on that and just watched Playhouse Disney.

refused to take any pain medication, and the one time the nurse did give it to her, she threw it up. So we did not revisit that. She kept saying she did not want it. She was running a low-grade fever most of Tuesday night and Wednesday. We wanted her to take Tylenol just for that, but no go.

She was released with instructions for me to call if her fever went up, if she couldn’t keep anything down, if she fell etc. was SO happy to get home!

She slept very well last night. I did manage to get a small bit of Tylenol into her by spiking her juice. No fever today! When I went in to check on her this morning, she was sitting on the edge of her bed and said “Watch this mom!” whereby she proceeded to walk across her room. She then took my hand and said “let’s go downstairs!” and walked downstairs. She is definitely happier at home!

I anticipate her recovery to go very smoothly and she will have her first visitors tomorrow – her friend will be coming by. She also received an envelope in the mail from her friends at preschool – she was very excited! She kept saying “My friends from preschool remembered me!”

Gail******************************************************************************************"Everyone has a photographic memory...some of us just don't have any film."

FareChase - Search multiple travel sites in one click.

[Guest guest]

Great news! She is a brave little girl. My thoughts and prayers go out to you and your family for a speedy recovery for - sounds like she's already on her way!

Good luck,

mom to and Jake"Gail M. Kimball" <gmkimball@...> wrote:

I know some of you subscribe to 's CarePage - so you may read this more than once.

had been saying since Tuesday that she wanted to go home, but I felt more comfortable staying overnight at least. Of course, staying overnight does NOT mean sleeping overnight. kept waking up moaning, which woke me up. So I would put in a movie for her and try to sleep again. By 4:00am we gave up on that and just watched Playhouse Disney.

refused to take any pain medication, and the one time the nurse did give it to her, she threw it up. So we did not revisit that. She kept saying she did not want it. She was running a low-grade fever most of Tuesday night and Wednesday. We wanted her to take Tylenol just for that, but no go.

She was released with instructions for me to call if her fever went up, if she couldn’t keep anything down, if she fell etc. was SO happy to get home!

She slept very well last night. I did manage to get a small bit of Tylenol into her by spiking her juice. No fever today! When I went in to check on her this morning, she was sitting on the edge of her bed and said “Watch this mom!” whereby she proceeded to walk across her room. She then took my hand and said “let’s go downstairs!” and walked downstairs. She is definitely happier at home!

I anticipate her recovery to go very smoothly and she will have her first visitors tomorrow – her friend will be coming by. She also received an envelope in the mail from her friends at preschool – she was very excited! She kept saying “My friends from preschool remembered me!”

Gail******************************************************************************************"Everyone has a photographic memory...some of us just don't have any film."

FareChase - Search multiple travel sites in one click.

[Guest guest]

Glad to hear an update on your little trooper Gail. I hope she feels better very soon. (((HUGS)))

Noelle (12-2-01)Ian (8-15-04)

Re: Update

Great news! She is a brave little girl. My thoughts and prayers go out to you and your family for a speedy recovery for - sounds like she's already on her way!

Good luck,

mom to and Jake"Gail M. Kimball" <gmkimball@...> wrote:

I know some of you subscribe to 's CarePage - so you may read this more than once.

had been saying since Tuesday that she wanted to go home, but I felt more comfortable staying overnight at least. Of course, staying overnight does NOT mean sleeping overnight. kept waking up moaning, which woke me up. So I would put in a movie for her and try to sleep again. By 4:00am we gave up on that and just watched Playhouse Disney.

refused to take any pain medication, and the one time the nurse did give it to her, she threw it up. So we did not revisit that. She kept saying she did not want it. She was running a low-grade fever most of Tuesday night and Wednesday. We wanted her to take Tylenol just for that, but no go.

She was released with instructions for me to call if her fever went up, if she couldn’t keep anything down, if she fell etc. was SO happy to get home!

She slept very well last night. I did manage to get a small bit of Tylenol into her by spiking her juice. No fever today! When I went in to check on her this morning, she was sitting on the edge of her bed and said “Watch this mom!” whereby she proceeded to walk across her room. She then took my hand and said “let’s go downstairs!” and walked downstairs. She is definitely happier at home!

I anticipate her recovery to go very smoothly and she will have her first visitors tomorrow – her friend will be coming by. She also received an envelope in the mail from her friends at preschool – she was very excited! She kept saying “My friends from preschool remembered me!”

Gail******************************************************************************************"Everyone has a photographic memory...some of us just don't have any film."

FareChase - Search multiple travel sites in one click.

[Guest guest]

I agree n, progress not perfection. Keep up the great work,

and congrats on your success. And thanks for all of the positive

posts. They help us newbies a bunch.

>

> Progress not perfection - I'm convinced that's the ticket. Here's

my

> update, so newbies can see the benefits in slow and steady.

>

> I'm in my C3-W5-D4 (ie, 3rd challenge, 5th week, 4th day).

>

> I changed monitors several times for how I was measuring body fat

> unfortunately, and most of them are not very reliable when it's as

high I

> was. I know that I started around 36-40% on one monitor and now

I'm 28% on

> that monitor (Tanita scale). And that seems right because I read

that the

> Tanita is easily 4% higher than reality, and the gym used

some 'fancier'

> gizmo to measure me and I came in at 24%.

>

> From obese to normal.

> From 14's to 8's and 10's.

> From about 175 to seeing 150.8 on the scale today; I'm sure I'll

bounce up

> and down before I actually drop below 150, but it sure was nice to

see that '0'

>

> And the absolute best-est parts?

> I haven't had a single day of feeling, " ugh, I hate dieting "

or " ugh - I'm

> starving " or " ugh-more cabbage and grapefruit "

> I can actually 'see' that I look better and acknowledge it to

myself and

> others.

>

> Have a good day -

> n

>

[Guest guest]

YAY n!!!!!

[Guest guest]

n! That is fantastic! The best is that you know it is a

lifestyle and you haven't 'lost' that weight you have REMOVED it

forever.

thanks for the inspiration!

Kari

>

> Progress not perfection - I'm convinced that's the ticket. Here's

my

> update, so newbies can see the benefits in slow and steady.

>

> I'm in my C3-W5-D4 (ie, 3rd challenge, 5th week, 4th day).

>

> I changed monitors several times for how I was measuring body fat

> unfortunately, and most of them are not very reliable when it's as

high I

> was. I know that I started around 36-40% on one monitor and now

I'm 28% on

> that monitor (Tanita scale). And that seems right because I read

that the

> Tanita is easily 4% higher than reality, and the gym used

some 'fancier'

> gizmo to measure me and I came in at 24%.

>

> From obese to normal.

> From 14's to 8's and 10's.

> From about 175 to seeing 150.8 on the scale today; I'm sure I'll

bounce up

> and down before I actually drop below 150, but it sure was nice to

see that '0'

>

> And the absolute best-est parts?

> I haven't had a single day of feeling, " ugh, I hate dieting "

or " ugh - I'm

> starving " or " ugh-more cabbage and grapefruit "

> I can actually 'see' that I look better and acknowledge it to

myself and

> others.

>

> Have a good day -

> n

>

[Guest guest]

Hi !!!

Sorry about grama ( My condolences to you all...

Hope your starting to feel better with the shoulder...

Loving Hugs

Mom

My shoulder surgery was on May 18th. Almost a month later I'm still having problems. I'm not sure what is going on, but I'm still having quite a bit of pain, and it is very hard to type...that's why I've not been on.

On May 25th I lost my Grandmother. It was unexpected and has been very difficult to deal with.

My laptop's hard drive when kablooey, but fortunately we have other computers here. It isn't as comfortable as checking email from the couch, but it works.

Hopefully the next few days I'll be catching up on reading the posts, but I may not be able to respond as thoroughly as I'd like to due to my shoulder problems. I hope everyone is doing well.

Hugs,

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

[Guest guest]

Oh Tracey,

When I read your post, my eyes watered up. I am so sad for this family. Like

someone else mention, this is my worst fear. I cannot even think about that

happening to my own children without it upsetting me. What a tough decision for

this family to make. I pray now that these 8 other families will be able to

benefit from this boy and families organ donation.

Thanks for the post update.

Saddened,

Tracey <pthahn@...> wrote: It is

with great sadness that I pass this news on from my sister in law.

passed away yesterday after battling to overcome his many injuries. His family

made the decision to remove him from life support after it was confirmed he was

brain dead. However, they gave the gift of life to possibly 8 other families

through donating his organs.

Thanks to all of you that prayed for this little boy and for his family. They

will more than ever now need those prayers to move on from this tragedy and get

ready to welcome yet another child into their family anyday now while they say

goodbye to another.

Tracey

[Guest guest]

I am so saddened by thier lost, dealth of any kind is

sad especailly when it is a young child with a life

ahead.It is a great gift that they have choosen in

their moment of greif to give the gift of life on so

others would not feel the pain they do. So unselfish,

I know I would try to it if poosible it came up.

--- Tracey <pthahn@...> wrote:

> It is with great sadness that I pass this news on

> from my sister in law. passed away yesterday

> after battling to overcome his many injuries. His

> family made the decision to remove him from life

> support after it was confirmed he was brain dead.

> However, they gave the gift of life to possibly 8

> other families through donating his organs.

>

> Thanks to all of you that prayed for this little

> boy and for his family. They will more than ever now

> need those prayers to move on from this tragedy and

> get ready to welcome yet another child into their

> family anyday now while they say goodbye to another.

>

>

> Tracey

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

thanks. i agree that is such a gift to be an organ donor. that is the last

thought any parent wants to make regarding their child's life. however, in the

days to come other children's lives will be saved by jackson and part of him

will live on to let another child grow up and see their future.

something like this never makes sense especially when a child is involved. for

whatever reason, god needed jackson back home with him for something greater

than he could do here on earth. although i didn't know this little boy

personally, i feel blessed to have " known " him for a few days and to pray for

him. i will just continue to pray for his family and find peace in the fact that

he is no longer hurting here, but is in the kingdom with his father where he

only knows peace.

tracey

Re: update

I am so saddened by thier lost, dealth of any kind is

sad especailly when it is a young child with a life

ahead.It is a great gift that they have choosen in

their moment of greif to give the gift of life on so

others would not feel the pain they do. So unselfish,

I know I would try to it if poosible it came up.

--- Tracey <pthahn@...> wrote:

> It is with great sadness that I pass this news on

> from my sister in law. passed away yesterday

> after battling to overcome his many injuries. His

> family made the decision to remove him from life

> support after it was confirmed he was brain dead.

> However, they gave the gift of life to possibly 8

> other families through donating his organs.

>

> Thanks to all of you that prayed for this little

> boy and for his family. They will more than ever now

> need those prayers to move on from this tragedy and

> get ready to welcome yet another child into their

> family anyday now while they say goodbye to another.

>

>

> Tracey

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thanks for Sharing Tracey. We've been keeping and his family in our

daily prayers and will continue to keep his family. This teaches us a valuable

lesson- to hold on tight to our children- so sad.

and Evan

Tracey <pthahn@...> wrote:

thanks. i agree that is such a gift to be an organ donor. that is the

last thought any parent wants to make regarding their child's life. however, in

the days to come other children's lives will be saved by jackson and part of him

will live on to let another child grow up and see their future.

something like this never makes sense especially when a child is involved. for

whatever reason, god needed jackson back home with him for something greater

than he could do here on earth. although i didn't know this little boy

personally, i feel blessed to have " known " him for a few days and to pray for

him. i will just continue to pray for his family and find peace in the fact that

he is no longer hurting here, but is in the kingdom with his father where he

only knows peace.

tracey

Re: update

I am so saddened by thier lost, dealth of any kind is

sad especailly when it is a young child with a life

ahead.It is a great gift that they have choosen in

their moment of greif to give the gift of life on so

others would not feel the pain they do. So unselfish,

I know I would try to it if poosible it came up.

--- Tracey <pthahn@...> wrote:

> It is with great sadness that I pass this news on

> from my sister in law. passed away yesterday

> after battling to overcome his many injuries. His

> family made the decision to remove him from life

> support after it was confirmed he was brain dead.

> However, they gave the gift of life to possibly 8

> other families through donating his organs.

>

> Thanks to all of you that prayed for this little

> boy and for his family. They will more than ever now

> need those prayers to move on from this tragedy and

> get ready to welcome yet another child into their

> family anyday now while they say goodbye to another.

>

>

> Tracey

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thanks for the kind words, . It is so sad to have a child be so normal in the beginning and then have them change. Karac was like that; until he was two we thought he was brilliant. I still think it was the MMR shot that is responsible for the change.

I hope the Zoloft will be helpful to your son. Zoloft is an antidepressant. Another med that is suppose to be good for bipolar is Abilify. Karac's mother tried him on the Abilify, but it made him more aggressive. Some on the list have used Abilify and it has worked well for them. It is strange to me how these meds work so differently for each child.

It is a delight to have you on the list, . Love and blessings, Pat K

[Guest guest]

Hi ,

Have you checked out www.nids.net or www.neuroimmunedr.com? My son sees Dr. Goldberg (these are his sites), and he does a lot of work with "spectrum" kids who have viral situations. You might want to check them out and see if anything looks familiar to your situation.

HTH,

Heidi

-------------- Original message -------------- From: "cindyjane100" <cindy@...>

Hi All,Hope you are all OK - I have been reading posts on and off but not had much time to be very involved this week. It never ceases to amaze me how us parents naturally find strategies to deal with situations, however difficult. Pat, you are an absolute mine of information!! And I am in awe of Kat's boundless energy and zest for life.Well, Sonny and I have been busy. We went to private doc as I am pretty much exasperated with National Health Service here in the UK. I wanted a re-assessment of Sonny and saw a Dr. Kewley who is from Australia and managed to get ADHD recognised in this country.He supports my theory that Sonny was MILDLY autistic (Asperger end) until seven when I was admitted to hospital for an emergency op and he stayed with my mum and sisters. During that time he became very hot and listless and did not say very much for three days. Mum called the doc who said he had a virus but she th

ought he was possibly missing me too. When I returned from hospital he was a little more remote but still more or less ok. This was mid-december 1999. By the time he went back to school in January 2000 he had lost almost all of his cognitive skills and seemed confused, frightened and a lot more autistic than before. Hence followed seven years of anxiety and heartache because I feel I really did lose my son that year. He became completely lost in his own world, stopped talking for 18 months and and developed an aggression and rage so powerful that I could not believe it. He had to leave mainstream school and attend a special needs one which could cater for him better. In the meantime, despite endless tests and an MRI which showed up as normal, no one could give me any answers. Dr. Kewleys thinks the virus during late 1999 could have caused encephalitis, especially as his cognitive skills were not immediately lost and it took a few weeks for them to decline (this is apparently a signature time).He also diagnosed Bi-Polar - which would be a direct result of his trauma - because he knew that he was becoming different and used to say to me 'Mum, I want to be the way I used to be' but did not understand what was happening. I think I would be depressed too if I had lost everything I'd learned up to seven and the world suddenly became such a scary place.Anyway, doc said he does not know why I had to fight so hard for Sertraline as he feels that it is the right med for Sonny and he would have prescribed in years ago to ease his chronic OCD and anxiety. He also said that he would have to stay on the Risperdal because the Sertraline would not stabilise his mood alone.Well anyway, I just thought I would let you know what was happening. Sonny has been a bit sick since taking the Sertraline which I understand is a common side effect and hopefully

will pass. I am told that I will see effects of Sertraline within 3-4 weeks. Its been two weeks tomorrow since his first dose and - maybe I am imagining it - but I can see life in his eyes since last week. I know its not a magic want - but maybe it will give his mind a little peace from the endless obsessive thoughts which interfere with most aspects of normal everday life and make his day a misery. Since last week his smile is wider, more genuine and not just an automatic response to someone smiling at him.Fingers crossed...........and thank you to everyone for being around. Just reading about other people's experiences and knowing that there are people who care - makes such a difference.Hugs and best wishes, xx

[Guest guest]

Heidi, thank you very much for this. I will have a look and let you know what I think of the sites.

Love,

xx

Re: UPDATE

Hi ,

Have you checked out www.nids.net or www.neuroimmunedr.com? My son sees Dr. Goldberg (these are his sites), and he does a lot of work with "spectrum" kids who have viral situations. You might want to check them out and see if anything looks familiar to your situation.

HTH,

Heidi

-------------- Original message -------------- From: "cindyjane100" <cindyhappyface (DOT) freeserve.co.uk>

Hi All,Hope you are all OK - I have been reading posts on and off but not had much time to be very involved this week. It never ceases to amaze me how us parents naturally find strategies to deal with situations, however difficult. Pat, you are an absolute mine of information!! And I am in awe of Kat's boundless energy and zest for life.Well, Sonny and I have been busy. We went to private doc as I am pretty much exasperated with National Health Service here in the UK. I wanted a re-assessment of Sonny and saw a Dr. Kewley who is from Australia and managed to get ADHD recognised in this country.He supports my theory that Sonny was MILDLY autistic (Asperger end) until seven when I was admitted to hospital for an emergency op and he stayed with my mum and sisters. During that time he became very hot and listless and did not say very much for three days. Mum called the doc who said he had a virus but she th ought he was possibly missing me too. When I returned from hospital he was a little more remote but still more or less ok. This was mid-december 1999. By the time he went back to school in January 2000 he had lost almost all of his cognitive skills and seemed confused, frightened and a lot more autistic than before. Hence followed seven years of anxiety and heartache because I feel I really did lose my son that year. He became completely lost in his own world, stopped talking for 18 months and and developed an aggression and rage so powerful that I could not believe it. He had to leave mainstream school and attend a special needs one which could cater for him better. In the meantime, despite endless tests and an MRI which showed up as normal, no one could give me any answers. Dr. Kewleys thinks the virus during late 1999 could have caused encephalitis, especially as his cognitive skills were not immediately lost and it took a few weeks for them to decline (this is apparently a signature time).He also diagnosed Bi-Polar - which would be a direct result of his trauma - because he knew that he was becoming different and used to say to me 'Mum, I want to be the way I used to be' but did not understand what was happening. I think I would be depressed too if I had lost everything I'd learned up to seven and the world suddenly became such a scary place.Anyway, doc said he does not know why I had to fight so hard for Sertraline as he feels that it is the right med for Sonny and he would have prescribed in years ago to ease his chronic OCD and anxiety. He also said that he would have to stay on the Risperdal because the Sertraline would not stabilise his mood alone.Well anyway, I just thought I would let you know what was happening. Sonny has been a bit sick since taking the Sertraline which I understand is a common side effect and hopefully will pass. I am told that I will see effects of Sertraline within 3-4 weeks. Its been two weeks tomorrow since his first dose and - maybe I am imagining it - but I can see life in his eyes since last week. I know its not a magic want - but maybe it will give his mind a little peace from the endless obsessive thoughts which interfere with most aspects of normal everday life and make his day a misery. Since last week his smile is wider, more genuine and not just an automatic response to someone smiling at him.Fingers crossed...........and thank you to everyone for being around. Just reading about other people's experiences and knowing that there are people who care - makes such a difference.Hugs and best wishes, xx

__________ NOD32 1.1454 (20060321) Information __________This message was checked by NOD32 antivirus system.http://www.nod32.com

[Guest guest]

Pat,

Thank you for your reply. I wish my son thought I was a delight but I am glad someone does!! :-)

The docs did warn me that the Zoloft might increase his aggression but fingers crossed - so far so good. He has been sick about five times in two weeks which I understand is a side effect. He does seem more content. He's nauturally a bit of a comedian (or he used to be) and last night was the first time in a long time that he did some impersonations, which was funny!

His sense of humour has always astounded me as it is so 'forward' and always has been for his age. And yet his other skills are much lower down the scale. Even the docs are puzzled!!

Love and best wishes,

xxxx

Re: UPDATE

Thanks for the kind words, . It is so sad to have a child be so normal in the beginning and then have them change. Karac was like that; until he was two we thought he was brilliant. I still think it was the MMR shot that is responsible for the change. I hope the Zoloft will be helpful to your son. Zoloft is an antidepressant. Another med that is suppose to be good for bipolar is Abilify. Karac's mother tried him on the Abilify, but it made him more aggressive. Some on the list have used Abilify and it has worked well for them. It is strange to me how these meds work so differently for each child. It is a delight to have you on the list, . Love and blessings, Pat K __________ NOD32 1.1454 (20060321) Information __________This message was checked by NOD32 antivirus system.http://www.nod32.com

[Guest guest]

glad to hear that you are doing better and on your way to recovery. hope to talk to you soon. evelyn M <brenda.morey@...> wrote: HI all, Once again my apologies for the mass mailing, and if you didn't get my previous mailings I also apologize as I can't remember who all I sent them to. Anyway, for

those who didn't know I had sinus surgery yesterday and it went very well. They gave me a lot of morphine since I take it orally daily anyway. The surgery was at about 9:30 and I think we got home around 12:30. I was able to eat and drink and didn't get sick at all. I am sore this morning but that is to be expected. So normal but quiet activity this week and next week I will start the pain rehab. Once again repetitive for some of you but this involves water aerobics, physical therapy, occupational therapy, psych, pharmacy counseling (they are going to try and cut down on some of my meds right now I am taking around 30 different meds a day and it's crazy). Oh yes and biofeedback, education, support group, I can't remember what else. It will be great and I am putting myself into it 110%. This is for my fibromyalgia and the severe pain accompanying it. I saw a GI doc last week, I have been having trouble with lots of nausea and some vomiting. I am already on Aciphex for reflux, and I have IBS and am on zelnorm for that. The GI was nice and wants an upper and lower GI in Dec. I am ok with that. I have to see an infectious disease doc in about 3 weeks and he will see what bacteria cultured in my sinuses and if any antibiotic treatment is needed further (the ENT gave me zithromax). By the way I had the complete genetic test for cystic fibrosis, it would be unusual if I was diagnosed at this late age but I have heard stranger stories. The bacteria I cultured in my sinuses are "cf bugs" and not usual for healthy people. Plus my asthma has gotten pretty bad lately and I'm using

a nebulizer machine like . I don't know. Also I most likely have diabetes for those of you I haven't mentioned that too. My fasting sugars have been high. My family doc said he could take care of that. There is something called cf related diabetes and I am not sure but if I do have cf I expect that is what I have. It's not the same as type 1 or type 2. I don't exactly understand it, I never paid much attention to it since Ang doesn't have it. I guess that is more that enough. I feel much better and that I am on the right path. and I have joined the First Christian Church in Fullerton and we are enjoying it. I am volunteering on Mondays to take attendance and going to Bible study Thurs AM. We have met lots of nice people. I had countless people praying for me and I know that helped (sorry Buddy). love you all.

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

, it sounds like the Zoloft is really working for you; that's great. It seems like when the meds are really what the kids need, that they are less likely to have the side effects. karac has been on Xanax for over a year, and we haven't had any of the side effects that the doctor warned us about.

Our problem with Karac now is that he suddenly won't let us cut or comb his hair. He looks like Samson!! He is 14 and is getting facial hair and will not let us come near him with a razor. Pretty soon he is going to look like the pictures of Jesus. LOL, Pat K