Re: H.

[Guest guest]

Thats great news . Hope they find out whats going on though. Take care

and God bless, Genny/Jodi's Mom

[Guest guest]

Haha.. I've been waiting for this book to come out mainly since it features

my good friend, Micheala!!!! Kuzia, and boyfriend, Cressman on the

cover! I am curious to see how the book turned out since I found it odd that

it was written by a man of average height... Those who read it before I, let

me know how it is!

Jen

[Guest guest]

Sure be glad to let you know. It is a puzzle to me.

[Guest guest]

Sorry I hit the enter too soon!!!!! Oh well, we'll try again....

Dear ,

An overnight pregnancy is certainly an interesting thought???????

Amy

[Guest guest]

Hi

,

Thanks for asking. We met with Dr. Ogilvie last Monday and he said that there is nothing can

be done other than fusion surgery. The more we wait the worse it would be. He

said there is no treatment to buy time for him, because it is a congenital

scoliosis. He asked us to come back for CatScan. He

will use that CatScan to create 3 dimensional model

of his spine to know exactly which bone to be removed before surgery. We will go

there again the last week of May.

How is Olivia? I haven’t heard anything

about her progress lately. Did I miss any letter? If I did I am sorry, because

I also joined 3 other support groups which all are loaded to the same email

address. It’s a lot to read and keep up with good info from other parents

all over the country/world.

Take care,

Meg

Re:

Meg and Darryl

Hi Meg,

How was Utah?

H.

[Guest guest]

Meg, Olivia is great.

She had field day yesterday, and it was a great experience for her. She is athletic, believe it or not..lol

Did Darryl see Dr. Ogilvie? The pres of the SRS? in Utah?

H.

[Guest guest]

Wow

, I am so happy with Olivia, nothing can stop her from being whatever

she wants to be.

Good for her J

Yes, Darryl was seen by Dr. J. Ogilvie, I don’t know if he is the pres of the SRS in

Utah, it’s good to know that.

Keep in touch,

Meg

Re:

H.

Meg, Olivia is great.

She had field day yesterday, and it was a great experience for her. She

is athletic, believe it or not..lol

Did Darryl see Dr. Ogilvie? The pres of the SRS? in Utah?

H.

[Guest guest]

Hi , Sorry i have'nt been able to post that much lately I looked at s storie and it turned out great.I wanted to thank you for letting me sure s storie with everyone. I also wanted to donate to the fund also do I just go to that sight to see how to do it I,m also checking with my friends and family on them to make a donation after I do it I'll let them know how to do it. I'll let you know when s storie and casting will be in the Shrinners book I just signed a release form for them to do it. and when My local Shrine club doese the poster with on it for the poker run I'll send you a copy I have to get alot of copies for everyone they want to hand them out to threre fiends to do the poker run. Is there anyone in your area that doese those maybe you could set one up to raise money for the fund. is just getting over her cold she still is throughing up at nights at times from her having that cold. Tell Olivia what a graet job she did at field day and we are proud of here.We use to have field day when I was younger and i always looked forward to it .(alot of fun) tell Shellie we are thinking about them. talk to ya soon.

Bridgette

Re: H.

Meg, Olivia is great. She had field day yesterday, and it was a great experience for her. She is athletic, believe it or not..lolDid Darryl see Dr. Ogilvie? The pres of the SRS? in Utah? H.

[Guest guest]

Hi , Sorry i have'nt been able to post that much lately I looked at s storie and it turned out great.I wanted to thank you for letting me sure s storie with everyone. I also wanted to donate to the fund also do I just go to that sight to see how to do it I,m also checking with my friends and family on them to make a donation after I do it I'll let them know how to do it. I'll let you know when s storie and casting will be in the Shrinners book I just signed a release form for them to do it. and when My local Shrine club doese the poster with on it for the poker run I'll send you a copy I have to get alot of copies for everyone they want to hand them out to threre fiends to do the poker run. Is there anyone in your area that doese those maybe you could set one up to raise money for the fund. is just getting over her cold she still is throughing up at nights at times from her having that cold. Tell Olivia what a graet job she did at field day and we are proud of here.We use to have field day when I was younger and i always looked forward to it .(alot of fun) tell Shellie we are thinking about them. talk to ya soon.

Bridgette

Re: H.

Meg, Olivia is great. She had field day yesterday, and it was a great experience for her. She is athletic, believe it or not..lolDid Darryl see Dr. Ogilvie? The pres of the SRS? in Utah? H.

[Guest guest]

Thanks

. Please let me know whenever you have his info in the future.

Meg

Re:

H. and everyone else.

Meg,

I dont know of Dr. S. Bradford. I'll see what I can find out.

HRH

[Guest guest]

,

I am sorry that I missed your email. This

morning I didn’t get any chance to check my email, I was rushing to take

Darryl to his Gym Class. We were late. From there I went straight to the

Hospital. It was very nice meeting with Shellie there. I am proud of her

courage and strength.

I definitely would love to get together

with you and if possible with S. too.

You have my number and my address. Please let

me know.

Talk soon,

Meg

Re:

Meg/Dr. Bradford

Meg,

Thanks...I was just curious.

If you go down to meet Shellie and Mo, let me know. Maybe all of us could

do lunch. Maybe S. could meet us, too..? Although, I think

she lives further south...

just a thought,

Im out of school now, so I have more time.

talk soon,

H.

[Guest guest]

Meg,

Maybe next week sometime, before Shellie goes home?

I'll be going to the hospital this weekend, and I'll get in touch with you after that.

talk soon,

H.

[Guest guest]

Hi

,

I am just looking at my day timer, for

next week I only have 2 days left. Either Wednesday after our

appointment with Dr. Mark kson at 10 am. I don’t

know how long it will take to wait until we can see him because with Dr. Chang, we always have to wait for 2 hours before

he came in to talk to us. Hopefully with Dr. kson the waiting time would be

quicker so by lunch time I can leave his office. OR Thursday any time after 11am. It would be nice if we all can get together with Shellie

before she goes home. Please let me know.

Re:

H.

Meg,

Maybe next week sometime, before Shellie goes home?

I'll be going to the hospital this weekend, and I'll get in touch with you

after that.

talk soon,

H.

[Guest guest]

,

I think it’s a good idea, let’s

talk again this summer.

Meg

Re:

Re: Meg and H.

Hi,

Its starting to sound like this week isnt good, and thats perfectly okay with

me. If we cant all meet when Shellie and Mo are here, then we can do it

sometime afterward.

I am free this summer, and would love to make you both lunch and maybe have the

boys over for a swim at some point. (The pool is 3ft tall, and I have a

solar cover that keeps the water really warm.)

Anyway, we have all summer.

talk soon,

HRH

[Guest guest]

HI,

Sounds fun!! IF you make the lunch I'll make the dessert!!

S.--

- In infantile scoliosis treatment , " Meg Wirantono " <mdco@c...>

wrote:

> ,

> I think it's a good idea, let's talk again this summer.

> Meg

>

> Re: Re: Meg and H.

>

> Hi,

> Its starting to sound like this week isnt good, and thats perfectly

okay

> with me. If we cant all meet when Shellie and Mo are here, then we

can

> do it sometime afterward.

>

> I am free this summer, and would love to make you both lunch and

maybe

> have the boys over for a swim at some point. (The pool is 3ft

tall, and

> I have a solar cover that keeps the water really warm.)

>

> Anyway, we have all summer.

>

> talk soon,

>

> HRH

>

>

>

>

[Guest guest]

Hi ,

Mehtas RVAD measuring technique is solid, in my opinion.

If his RVAD is 21, I would consider it progressive. Its very low, but she did say 20 or below is not progressive.

I would get a second or third opinion on that RVAD. If 2 more docs say its 21, and it appears to be 21 on the 20th, then I would be seeking out a serial corrective cast doc.

Its better to be cautious and take a pro active approach. Remember, early treatment is key, to getting little ones straight.

Sincerely,

HRH

[Guest guest]

I completely agree with H. I look at it this way: Casting

doesnt hurt, and can only help. Waiting can allow it to progress and

risk the possibility of the curve " getting out of hand. " Thats

another plus with casting over surgery... if it doesnt work, no harm

done... surgery is irraversable. All of our little ones have had HUGE

successes with casting so far... even if (speaking worse case) it

doesnt " cure' them and the curves creap back up... think of all the

extra time they got with it low and how far it would have progressed

without the cast. Just something to think about.

> Hi ,

>

> Mehtas RVAD measuring technique is solid, in my opinion.

> If his RVAD is 21, I would consider it progressive. Its very low,

but she

> did say 20 or below is not progressive.

> I would get a second or third opinion on that RVAD. If 2 more docs

say its

> 21, and it appears to be 21 on the 20th, then I would be seeking

out a serial

> corrective cast doc.

>

> Its better to be cautious and take a pro active approach.

Remember, early

> treatment is key, to getting little ones straight.

>

> Sincerely,

>

> HRH

[Guest guest]

Thank you. How do I get to see Dr. or one of these wonderful

docs in SLC? We are in Northern New York (Black River, NY. Home of

Fort Drum and the 10th Mountain division if you listen to the news

about Iraq enough. Also only a 1/2hour from the Canadian border).

We are currently traveling to Syracuse (about an hour south) for

care, but am clueless on where to go for a second opinion. Should I

go straight to one of these docs talked about on this site, or will

another ortho doc here in our state work? I hate to do any needless

traveling, but want to do everything possible for my little guy.

I sometimes feel alone with this because I am the one doing all the

research and my husband just hears what I learn. He's kind of put

all his faith in my opinion, but sometimes you just want someone

else's opinion, you know? My parents are the ones at birth to tell

me that he was fine and leave him alone. I kept saying he was

crooked but no one believed me. Now that I've been proven right, I

hate to let them dimish the severity of this. Now they all keep

saying, he's looks better. He's not so crooked anymore. I want the

xrays to tell me that. I'm not believing that anymore.

Sorry to ramble on but you guys all know first hand how this goes and

I'm all new to this.. You don't know how much you've helped me

already! Thank you.

> Hi ,

>

> Mehtas RVAD measuring technique is solid, in my opinion.

> If his RVAD is 21, I would consider it progressive. Its very low,

but she

> did say 20 or below is not progressive.

> I would get a second or third opinion on that RVAD. If 2 more docs

say its

> 21, and it appears to be 21 on the 20th, then I would be seeking

out a serial

> corrective cast doc.

>

> Its better to be cautious and take a pro active approach.

Remember, early

> treatment is key, to getting little ones straight.

>

> Sincerely,

>

> HRH

[Guest guest]

Thanks for the advice. I will be pushing for an MRI when we go in to

talk to the doctor next time. The two closest " large " cities are

Rochester, MN and Minneapolis/St. (although Minneapolis/St.

isn't really that close!) My husband and I definately wants a second

opinion. Maybe we can get a consult to Mayo clinic if our insurance

will cover it?

Thank you!

Caitlyn

> > First and foremost you should look into seeing a

> > therapist for your son. All the tests, doctors, etc.

> > can scare a child and bring up all sorts of feelings.

> >

> > I know because this all happened to me as a child. I

> > wish my parents had done things differently.

> >

> >

> > another

>

>

>

>

>

>

[Guest guest]

Hi Caitlin,

You can't go wrong with the Mayo Clinic.

While they're ranked 18th in pediatrics (no tops, but still impressive), they're

ranked #1 in hormonal disorders, and #3 in urology.

Pediatric & adolescent medicine site:

http://www.mayoclinic.org/pediatrics/index.html

Hormonal site:

http://www.mayoclinic.com/invoke.cfm?id=DS00300

Urology site:

http://www.mayoclinic.org/urology-rst/

You might want to start with a doctor in the hormonal disorder department first.

He/she could coordinate with other departments if needed.

Best regards,

Bruce

> > > First and foremost you should look into seeing a

> > > therapist for your son. All the tests, doctors, etc.

> > > can scare a child and bring up all sorts of feelings.

> > >

> > > I know because this all happened to me as a child. I

> > > wish my parents had done things differently.

> > >

> > >

> > > another

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

Glad we were able to chat this a.m., too. Its very frustrating that this doc in

Denver didnt refer you to kson. What is this doc thinking? Everyone in

the

orthopaedic dept, knows that kson is the only one in Denver practicng early

treatment. Be sure to let him know how much this has inconvenienced your

family. After all, you dont live a couple miles from the hospital. IMHO, that

doc should have consulted w/ kson on this case, while you were at the

hospital. If kson wasnt available at the time, the dictation should have

been forwarded to him. NOT acceptable.

I was told a couple of weeks ago, that ISOP brochures were in the waiting room

in the orthopaedic dept. at Childrens in Denver! Looks like I am going to have

to check-up on that.

Hopefully, it was all a misunderstanding....But, that still doesnt make it

alright.

Sincerely,

HRH

H.

Thanks so much for talking to me this morning. It helped more than you

could ever know. I did call our doctor and made an appointment with Dr.

kson in February (soonest I could get in.) They did tell me his RVAD

was less than 20 and it is not congenital scoliosis. Until then I guess

I will read and learn as much as I can. Thanks again.

[Guest guest]

I'm so glad that I not unusual in this. It's so hard for me to go from being so creative and a good cook in the kitchen to not being able to remember how to do the simplest of things.

I thank my son all the time. I the type of person that loves to hug and kiss my kids daily and let them know that I love them and how much I appreciate them. On Thursday, when the sale ads come out he goes to the store to pick up his check and to bring home a sale ad so we can go thru it to see what we need. He is trully a unique individual.

Hugs H.

From: heidi <heidilhlokey@...>Subject: H.dominie Date: Saturday, November 8, 2008, 2:53 PM

When I cook it is simple or crock pot stuff.I use to cook allot nd won blue ribbons for my chili and fudge. Now it is like tossed salad, chicken and dumplings and steamed veggies. Last week i made chili in crock pot forgot chili powder to add it in for the stuff in the envelopes has MSG in it.Also once with chicken and dumplings with the dumplings forgot to add the salt. so yes it is simple things with me too. My hubby cooks too even helps does the dishes when i cook.Like tonight chicken nuked up mashed sweet potatoes and some steamed veggies.But i do simple things now mainly crock pot things or tossed salads too. I do make spaghetti and meat balls too.I got everything for my imitation crab meat soup except forgot he cornstarch so get the cornstarch later on this next week. but yes I think we all have been in your shoes.I do a shopping list on an envelope and put coupons in there since

we shop once a month. I try to remembe to look through the coupons too and go from there. Ss donot worry we all are normal and have done it nad will probably keep doing it too.Thank your son for being so helpful to you. hugs heidi

[Guest guest]

That's really great ! You & Your Son sound a lot like me & my Son! I don't know what I would ever do without him! And I tell him all the time as well. It is so hard going from what we used to be & what we are now. I can remember loving to cook,experimenting to make my own unique creations haha! They all were usually good haha! And I've been a artist all my life! It is so hard to come to grips,at times,that I wont be able to draw,sketch,etc...that day,because I can barely move my fingers or they cramp up so bad when I try and do detailed things. But it feels so good to be understood! For Once! Thank God for You All! Take care,Pam.S

Check out my store for MANY unique

Fibromyalgia Awareness Items At=

http://www.zazzle.com/pammys* Thanks! Pam

[Guest guest]

Let me ask you Pam, you mentioned your fingers and I don't recall reading anything about FMS causing problems with fingers. My fingers hurt so bad that I can't pick up, hold or even open jars on my bad days. I do however, have carpal tunnel. I know that my pain numbness and tingling can be caused by that in my hands, but the fingers? Are any of my Dx causing the pain in my fingers, such as...FMS/CFS/MCS/MPS and Neuropathy in my legs? I can't seem to get straight answers from my docs and I go to two of them this week. Why are you having pain in your fingers, if you don't mind my asking?

Your son sounds just wonderful and they're just sweethearts. We must have done something right, but I do believe that if it wasn't in them to be who they are, then it may not have happened.

It's people like you and others in the group that keep me going, not the doctor's. I hate to say this but for the most part they're just terrible. I apologize to those doctor's who are the exception, and I do believe those doctor's know who they are.

Hugs to you and everyone. H.

From: P J <ps1968pm@...>Subject: Re: H.dominie Date: Sunday, November 9, 2008, 6:18 AM

That's really great ! You & Your Son sound a lot like me & my Son! I don't know what I would ever do without him! And I tell him all the time as well. It is so hard going from what we used to be & what we are now. I can remember loving to cook,experimenting to make my own unique creations haha! They all were usually good haha! And I've been a artist all my life! It is so hard to come to grips,at times,that I wont be able to draw,sketch, etc...that day,because I can barely move my fingers or they cramp up so bad when I try and do detailed things. But it feels so good to be understood! For Once! Thank God for You All! Take care,Pam.S

Check out my store for MANY unique

Fibromyalgia Awareness Items At=

http://www.zazzle. com/pammys* Thanks! Pam

[Guest guest]

Okay H. NOW I am REALLY jealous!

S.

H.

dominie

Date: Saturday, November 8, 2008, 2:53 PM

When I cook it is simple or crock pot stuff.I use to cook allot nd

won blue ribbons for my chili and fudge. Now it is like tossed

salad, chicken and dumplings and steamed veggies.

Last week i made chili in crock pot forgot chili powder to add it in

for the stuff in the envelopes has MSG in it.

Also once with chicken and dumplings with the dumplings forgot to add

the salt. so yes it is simple things with me too. My hubby cooks

too even helps does the dishes when i cook.Like tonight chicken

nuked up mashed sweet potatoes and some steamed veggies.

But i do simple things now mainly crock pot things or tossed salads

too. I do make spaghetti and meat balls too.

I got everything for my imitation crab meat soup except forgot he

cornstarch so get the cornstarch later on this next week. but yes I

think we all have been in your shoes.I do a shopping list on an

envelope and put coupons in there since we shop once a month. I try

to remembe to look through the coupons too and go from there.

Ss donot worry we all are normal and have done it nad will

probably keep doing it too.Thank your son for being so helpful to

you. hugs heidi

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