Re: OT: Home from the hospital with

[Guest guest]

Thank you Sandi for this report on . This is wonderful news and how great it is that it was caught in time for surgery.

We'll be praying with you that the improvements will continue.

Love

MaggieGet trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

Hi Sandi,

I always love the updates! I'm so glad his surgery went well. (For those of you who are new, has been through way worse than any of us). I hope this surgery will be the last one for at least several months. I think of him often and still have the picture of him with his little helmet on when he was a baby.

Thanks again for the update!

Thunder Bay, Ontario

[Guest guest]

I had no idea this was going on.I hate missing in action cause I get

so behind on things.Im so glad my little man is doing well now.Thank

God things were caught when they were.Keeping you all in my

prayers!!!!

Tonia

>

> Hi All,

>

> I just wanted to give a brief update that is home safe

and

> comfortable. His surgery was Friday morning and he is already

feeling

> much better today. Dr Lazareff said the Chiari was very severe and

if

> he hadn't have had the surgery he wouldn't have survived. It is

very

> fortunate that my daughter had ordered copies of his medical

records

> at Children's Hospital last month....this was due to the advice of

> doctors at Stanford earlier this year while visiting at my home

and

> was hospitalized up in No CA. She didn't even know he had

> Chiari until reading it in the report from a year ago. It was

> apparantly diagnosed in an MRI report and nobody had ever

mentioned

> it to her. She then got the copy of the MRI (from Children's

Hospital

> LA) and immediatly went to Dr Lazareff at UCLA with the findings.

> according to this MRI from a year ago, the Chiari was already bad

> enough to require surgery.

>

> Dr Lazareff had to remove part of the cerebellum due to necrosis.

He

> said that will be as fine as he has been up until surgery

> last week and time will tell us how he progresses as a result of

the

> surgery. We are hoping the damage to his brain won't have a

negative

> impact on the positive results we have been hoping for, like being

> able to have the balance he needs to walk. He is still our same

> little lovable and we have noticed a few improvements.

His

> eyes look better and his muscle coordination in his hands seems

> improved already just 3 days after surgery and he has been sitting

up

> in bed and having us all perform and dance for him like puppets

which

> we do ever so willingly...

>

> Sorry, this wasn't really as brief as I had intended, but I wanted

to

> thank all of you who follow up on for your thoughts and

> prayers. It means a great deal to me.

>

> Exhausted and happy to be home...Hoping and praying that the

> improvements continue!

>

> Sandi in No CA

>

[Guest guest]

Hi Tonia,

It is so sweet that you refer to as your little man! He is

indeed a little man....a very brave one at that, and funny too!

has learned recently how to pray and it has become a new

ritual for us all. Nobody is sure where he learned it as we don't

usually pray, but now suddenly several times during a meal we hold

hands, bows his head and gives thanks and we all say

amen....then he wants everyone to clap and say " woo hoo " ! LOL

Thank you for thinking of him so fondly, for keeping us in your

prayers and for being such a pillar of support to everyone!

Sandi in No CA

> >

> > Hi All,

> >

> > I just wanted to give a brief update that is home safe

> and

> > comfortable. His surgery was Friday morning and he is already

> feeling

> > much better today. Dr Lazareff said the Chiari was very severe

and

> if

> > he hadn't have had the surgery he wouldn't have survived. It is

> very

> > fortunate that my daughter had ordered copies of his medical

> records

> > at Children's Hospital last month....this was due to the advice

of

> > doctors at Stanford earlier this year while visiting at my home

> and

> > was hospitalized up in No CA. She didn't even know he

had

> > Chiari until reading it in the report from a year ago. It was

> > apparantly diagnosed in an MRI report and nobody had ever

> mentioned

> > it to her. She then got the copy of the MRI (from Children's

> Hospital

> > LA) and immediatly went to Dr Lazareff at UCLA with the findings.

> > according to this MRI from a year ago, the Chiari was already bad

> > enough to require surgery.

> >

> > Dr Lazareff had to remove part of the cerebellum due to necrosis.

> He

> > said that will be as fine as he has been up until

surgery

> > last week and time will tell us how he progresses as a result of

> the

> > surgery. We are hoping the damage to his brain won't have a

> negative

> > impact on the positive results we have been hoping for, like

being

> > able to have the balance he needs to walk. He is still our same

> > little lovable and we have noticed a few improvements.

> His

> > eyes look better and his muscle coordination in his hands seems

> > improved already just 3 days after surgery and he has been

sitting

> up

> > in bed and having us all perform and dance for him like puppets

> which

> > we do ever so willingly...

> >

> > Sorry, this wasn't really as brief as I had intended, but I

wanted

> to

> > thank all of you who follow up on for your thoughts and

> > prayers. It means a great deal to me.

> >

> > Exhausted and happy to be home...Hoping and praying that the

> > improvements continue!

> >

> > Sandi in No CA

> >

>

[Guest guest]

Hi ,

Thank you always for your support! It's good to know that it is ok to

give my updates about as he is such a big part of my life

and you all have been such a huge part of mine.

His photos are still in the photos section of the group site along

with a fairly recent one taken in January!

Love to hear updates from you too and how well you are eating now! I

especially get excited to hear you can eat eggs!!! It just makes me

really warm and happy inside to read that! : )

Take Care,

Sandi

>

> Hi Sandi,

>

> I always love the updates! I'm so glad his surgery went

well. (For those of you who are new, has been through way

worse than any of us). I hope this surgery will be the last one for

at least several months. I think of him often and still have the

picture of him with his little helmet on when he was a baby.

>

> Thanks again for the update!

>

>

> Thunder Bay, Ontario

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Find hidden words, unscramble celebrity names, or try the ultimate

crossword puzzle with Live Search Games. Play now!

> http://g.msn.ca/ca55/212

>

[Guest guest]

Thank you Maggie,

If it wasn't for s seizures that led us to Stanford, my

daughter wouldn't have heard the doctors lecture on the importance of

having s medical records, especially when travelling! This is

information that is highly recommended for all of us here as well. I

still haven't gotten my medical records even though I have heard over

and over to get copies!!! I always forget!

She went home and started calling all the hospitals and got them all

together and she just happened to run across the Chiari report while

reading....we can't believe it was never mentioned due to the

seriousness and severity.

We are relieved we caught it and just hope that we are finished with

surgeries! Dr Lazareff said the Chiari is fixed for good and won't

come back.

Hope everything is going well with you and your family,

With love and hugs,

Sandi

>

> Thank you Sandi for this report on . This is wonderful

news and how

> great it is that it was caught in time for surgery.

>

> We'll be praying with you that the improvements will continue.

>

> Love

> Maggie

>

>

>

> **************Get trade secrets for amazing burgers. Watch " Cooking

with

> Tyler Florence " on AOL Food.

> (http://food.aol.com/tyler-florence?video=4?

& NCID=aolfod00030000000002)

>

[Guest guest]

Thanks for the update, Sandi. I am glad for you all that things are

looking better.

notan

[Guest guest]

Your very welcome! Omg that is crazy that he is doing that and has

not learned it from you all.What does that tell you???????

Truly amazing-thats my lil man.lol Im glad he is well now!!!!!

Hey..... I wonder if the next time I can yell out whoo hooo and clap

if people will think Im crazy???lol

Please keep me posted.

Tonia

-- In achalasia , " sholtsmith " <holt-smith@...> wrote:

>

> Hi Tonia,

>

> It is so sweet that you refer to as your little man! He

is

> indeed a little man....a very brave one at that, and funny too!

>

> has learned recently how to pray and it has become a new

> ritual for us all. Nobody is sure where he learned it as we don't

> usually pray, but now suddenly several times during a meal we hold

> hands, bows his head and gives thanks and we all say

> amen....then he wants everyone to clap and say " woo hoo " ! LOL

>

> Thank you for thinking of him so fondly, for keeping us in your

> prayers and for being such a pillar of support to everyone!

>

> Sandi in No CA

>

>

>

>

> > >

> > > Hi All,

> > >

> > > I just wanted to give a brief update that is home

safe

> > and

> > > comfortable. His surgery was Friday morning and he is already

> > feeling

> > > much better today. Dr Lazareff said the Chiari was very severe

> and

> > if

> > > he hadn't have had the surgery he wouldn't have survived. It

is

> > very

> > > fortunate that my daughter had ordered copies of his medical

> > records

> > > at Children's Hospital last month....this was due to the

advice

> of

> > > doctors at Stanford earlier this year while visiting at my

home

> > and

> > > was hospitalized up in No CA. She didn't even know he

> had

> > > Chiari until reading it in the report from a year ago. It was

> > > apparantly diagnosed in an MRI report and nobody had ever

> > mentioned

> > > it to her. She then got the copy of the MRI (from Children's

> > Hospital

> > > LA) and immediatly went to Dr Lazareff at UCLA with the

findings.

> > > according to this MRI from a year ago, the Chiari was already

bad

> > > enough to require surgery.

> > >

> > > Dr Lazareff had to remove part of the cerebellum due to

necrosis.

> > He

> > > said that will be as fine as he has been up until

> surgery

> > > last week and time will tell us how he progresses as a result

of

> > the

> > > surgery. We are hoping the damage to his brain won't have a

> > negative

> > > impact on the positive results we have been hoping for, like

> being

> > > able to have the balance he needs to walk. He is still our

same

> > > little lovable and we have noticed a few

improvements.

> > His

> > > eyes look better and his muscle coordination in his hands

seems

> > > improved already just 3 days after surgery and he has been

> sitting

> > up

> > > in bed and having us all perform and dance for him like

puppets

> > which

> > > we do ever so willingly...

> > >

> > > Sorry, this wasn't really as brief as I had intended, but I

> wanted

> > to

> > > thank all of you who follow up on for your thoughts

and

> > > prayers. It means a great deal to me.

> > >

> > > Exhausted and happy to be home...Hoping and praying that the

> > > improvements continue!

> > >

> > > Sandi in No CA

> > >

> >

>

[Guest guest]

Sandi

Glad to hear in doing better and being such a cutie!

We're all reading along and thinking of you and your family.

All my best

Dawn