Hi!

[Guest guest]

Welcome ,

My son Jordan (13 yrs) is type II. Two questions:

1. How was Crystal's diagnosis made? (i.e. What methods did the doctors use

to test for it?). I have never heard of someone with SMA regaining

abilities, and certainly not to the degree you describe. That's phenomenal,

especially when regaining even small functionality is a major feat.

Regaining major motor function is very, very non-classical for SMA.

2. I'm very interested in the nutritional juice+ drink and filtration system

you mentioned. Could you share it with us?

Welcome again!

Jay

Hi!

Hi everyone! I have joined this email group because I have a daughter with

SMA type 2/3. Her name is Crystal Allbritton. She is 3 years old. She

stopped her abilities at standing for a few seconds when she was 8 months

old, and then quickly weakened to not even being able to roll by the time

she

was 18 months old, which is when we finally got her diagnosis of SMA at the

severest level of type 2. After a year and a half of extensive research and

learning from talking to other families, having the best of the best

therapists for her, she is now rolling without any problems, sitting without

ever falling, walking with assistance for 5 minutes at a time, and can take

baby steps all on her own while holding onto something.

As she continues to grow, I know her issues will change and would love to

continue connections with other families that may be able to show me the way

at times or offer suggestions for what has worked for them, as I would like

to share our experiences with all of you.

Thank you so much for letting me join your group and I look forward to

hearing from each and every one of you.

God Bless! Take care of you and yours!

If anyone at anytime would like to be removed from the mass mailings I send

out and/or Crystal's updates on her website, please just let me know. God

Bless All. Meet Crystal for yourself at: <A

HREF= " http://www.our-sma-angels.com/crystal " >Crystal's Website</A> or visit

<A HREF= " http://www.our-sma-angels.com " >Our SMA

Angels site</A> and meet the rest of the children! Feel free to email me

with any

inquiries concerning Juice+ and/or NSA Filtration systems I use with Crystal

for extra health benefits.

[Guest guest]

" severest level of type 2 " ? I consider myself to have a relatively mild type 2,

but I never had the abilities you've described. And like Jay said, regaining

those abilities isn't usual either. Interesting....

Anyway, hi. I'm e, SMA II, 18 years old, freshman in college (BYU in

Utah), originally from Washington. Welcome to the list!

~e~

[Guest guest]

kristine.....we gotta meet! have you met any hot guys at BYU??????

[Guest guest]

As you already know...... early intervention is the key... aggressive

programs work well for most young children with ASD's. If you need any help

don't hesitate to email us Peaceforkids2002@...

Mike

*********************************************

The Office Of Advocacy for Autistic Children

*********************************************

----- We Need Your help to stay open -------

**********************************************

E. ,

Reg. U.S. Civil Rights Lobbyist

Dir, OAAC Dir, C.O.P.S. <inquire about this>

Lil Mikey's Daddy

============================

" We Speak for those who can not, we will fight relentlessly for the Civil

Rights of all Children....disabled or not .. Globally "

============================

Contact Mike for free online advocacy here at this email address or

call if you need immediate assistance at 808-845-7841 in Honolulu at my

home office.......1659 Meyers Street Monolulu, HI 96819(send any

doc's/donations here please)....... We offer parents up to 1 hour of free

teleconference or phone advice. Due to increasing costs and lack of outside

funding/donations(if you can send us either long distance phone cards or a

small monetary donation to help cover office supplies and other costs..we

would realy appreciate it), we are now asking for a min. donation of

$300.00 to cover the costs of initiating the case and preparing the due

process documents/discovery... for cases that go beyond the need of a phone

conference or teleconferece with the district and require more than 1 hour

of teleconference time, we ask for a donation based on the current

situation. This is to cover the cost only... of the services we provide...

we are a not for profit entity and work for children, not money. For

informal help you can also call , our Chicago area rep at 217-586-7504,

for free phone advocacy anytime. In person professional advocacy available

on a case by case basis nationwide. We will be partnering up with a new

attorney soon here in Hawaii where our office will be located, until then

please call me at the 808 # if you need to....

don't hesitate.

" Peace to the Children "

- Mike

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

>From: " PATRICIA HOYT " <phoyt916@...>

>Reply-Autism_in_Girls

> " Autism_in_Girl " <Autism_in_Girls >

>Subject: Hi!

>Date: Tue, 19 Nov 2002 16:55:15 -0500

>

>I've been locked out of e-mail/msn for a few days. Welcome aboard Debi &

>Abbie's mom. Debi- I'm like you, new to the group with a 2 1/2 year old

>daughter, is, who has PDD-NOS. Pati

>

>

>

[Guest guest]

> Actually I have my first IEP coming up in about 2 weeks. Anyone have any good

suggestions?

Karyn

> From: " " <Peaceforkids2002@...>

> Date: 2002/11/20 Wed PM 05:25:44 EST

> Autism_in_Girls

> Subject: Re: Hi!

>

>

[Guest guest]

welcome sandy

this is a great list....i grew up near you...in camillus ??

nice to meet you

patti

[Guest guest]

Yay, Sandy!!!!!

It's great to see you here. Lots of REAL, unpretentious people and excellent

advice. Welcome!

BTW, I don't live in Central New York, either. I'm the sole member of the

Long Island Chapter, I think.

Geri

[Guest guest]

Yoo-hoooooooooooooooooo- so that's why my phone has been quiet this

a.m. You've been hanging out over here! LOL

Sandy has more energy than almost anyone I know- except Geri. [Who

occupies a different plane of existence. <g>] She's SWEEEEEEET,

too! [And one of my closest soap pals.]

She's kind of deprived down in the south... wrong food <g>, they talk

FUNNY, have different standards for manners [LOL]- this woman needs a

good dose of the NORTH to keep her healthy!

And ignore her when she starts talking about how it's 70 and her %^!!

pansies are blooming. <g> Or, do a comeback w/ something like

French bread, or veal parm., and she gets quiet really fast. [hee.]

Deb

-- In , " Sandy " <psublue@c...>

wrote:

>

> I thought I would drop a line and say, " Hello. " I look forward to

> learning new ideas and sharing what I have offer.

>

> I have been making bath & body products for 4 yrs now, a mom of two

> boys(4 & 6), and work PT in our local Library. Reading up on how to

do

> the crockpot method-kinda have that lye fear. Noticed a few

familiar

> names here-Hey Deb and Geri!!

>

> I do not live in Central NY - but I did grow up in Marcellus and

have

> wonderul memories. :> Now, I am in the south and trying to learn

the

> ropes. (Don't say it Deb!)

>

> Thanks for letting me join and looking forward to being a member!

>

> Sandy

[Guest guest]

Deb...no no dear...you have that wrong. As a southern girl living in the

north(I went and married a Yankee)...Y'ALL are the ones that talk

funny....and food? My poor deprived children LOVE when my family sends us a

care package of the foods we can't get up here in the frozen north.

With grins 'n giggles,

(who wants to be somewhere warm and sunny so bad right now she's going

batty)

>

>She's kind of deprived down in the south... wrong food <g>, they talk

>FUNNY, have different standards for manners [LOL]- this woman needs a

>good dose of the NORTH to keep her healthy!

>Deb

_________________________________________________________________

Add photos to your messages with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

[Guest guest]

I think the worst of it is over. Sara had to come home, part of her

deferment agreement, and she has to obey her parents rules- it is

even written that way. And she has to stay out of trouble for 1 year.

And pay, and pay. And he hopes we dont pay her fines for her, what a

laugh. How is a 14yo supposed to earn $2,000?

We just layed around all weekend- except for the shopping, cooking

and cleaning parts. Jerry actually thought he would be back at work

Monday.(did he not listen to me???) He is up walking occasionally...

and I did get him in the shower...He goes back to the dr Friday, I'll

let him explain it to him...

I go back to the dr tomorrow. The Medrol is working, but my chest is

still tight. What bothers me more is the dizzy spells, I went down by

the bed the other day, never went black this time, but my legs went

jello, with no warning whatsoever. I cant remember what it means when

there is less than 20 points between the BP/ the pulse pressure. I

guess it means you fall down. lol

We finally got a little rain, but with it the lightning- 8 strikes

on Mesa Verde and 8 fires. I think they have them all under control

now, but they had to evacuate all the tourists again.

How are you doing???

Hope we all have a boring week!

Love,

> Nice to hear from you, though it sounds like you have a ton of

stuff brewing. Hope Soc Sec comes to their senses FINALLY!

> Lee

>

>

[Guest guest]

Hi ,

There are a few places to look for ideas for home parties. Try these sites

for ideas. Hope they can help you,

Dawn

Washington State

http://www.candlemaking.org.uk/candleparties.html

http://www.bestofboards.com/index.html

http://www.candlecauldron.com/parties.html

-----Original Message-----

I need some help. Haven't been in business quite a year yet....have learned

alot but am now faced with another situation. For my birthday, my friend

said she would host a " Home Party " for me so I can sell my product. I think

this is great but don't know too much about home parties. Do you play games

(any suggestions if " yes " )? Should I have a raffle? Is there any one out

there who has done " home parties " and can you help me???? Thank you in

advance.

Gable

Herbal Delights

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.502 / Virus Database: 300 - Release Date: 7/18/2003

[Guest guest]

Thank you for the encouragement. Ashton is still wheezing right now. This is

her second run of antibiotics, but the chest is still really tight. They have

put her on all the high does steroid inhalers again and nebulizer every four

hours.

I just panic. I know she is stronger than before, and she hasn't had the IVIG

very long, but...

I know, welcome to life as we know it.

I keep praying for all the children.

Lloyd

Mom to Ashton 10, Asthma, CVID, & Marina 8, Asthma

[Guest guest]

Hi and welcome! I have a friend who until recently lived in that

area(now in MN). You will love this group!!

>

> Hi, my name is Cheryl and I am from Depew, just outside Buffalo. I> Cheryl

[Guest guest]

Hi Cheryl! I am in Ontario which is just outside of Rochester about 20

minutes. I've been doing CP for about 7 years and have added all sorts of

toiletires and MP along the way.

Happy Holidays to you too!

Shaye

Hi!

Hi, my name is Cheryl and I am from Depew, just outside Buffalo. I am

really happy to learn of a local group like this and look forward to

getting to know each of you.

I have been doing toiletries and MP and am ready to make the move to

CP, which I am very excited about. I hope to learn alot for you guys

and am really happy to be here! Happy Holidays to all!

Cheryl

[Guest guest]

HI Cheryl & all our new members! I went to college in Fredonia and

had a good friend who was from Depew.

Anyway! I'm Colleen, co-list owner with Shaye. I am from

Baldwinsville, but moved to SC a year ago. I do mainly mp, but have

been doing cp & love it. If you check out some supplier sites you can

usually find really good cp recipes. That's how I started out, until

I developed my own " secret " recipes. I can tell you that I have

sensitive skin, on the dry side, and prefer a soap with butters and

avocado or apricot oil. I don't like castile because I think it's

slimey and no lather. But to each his own.

I hope you enjoy your stay here! Please feel free to ask away, we've

got lots of experienced soapers here.

Colleen

Handcrafted Glycerin Soap

http://www.countrymeadowcreations.com

[Guest guest]

Go Stacey GO!billsgirl93 <billsgirl93@...> wrote:

Hi Everyone!! I have been trying to keep up with all of the new peopleand wonderful posts! Trying to get my exercise program figured outwith the total body makeover. My book came yesterday so I'm all set todo it though as I read it the exercise program seems intense but maybeit won't be bad once I actually do the exercises. Pretty much acircuit weight routine three days a week. Functional exercises sixdays (stretches and abs) a week. Aerobic exercise for five days 30minutes then on the sixth day 60 minutes.Stacey

Start your day with - make it your home page

[Guest guest]

Hello May!

You have come to the right place for support. This group really has been a Godsend to me. And, I think your writing is fantastic!

I am sorry that the other children tease your daughter. That must be so hard .

I am hoping there is a way that we can help you get your little girl here to the States so that she can receive the medical care that she needs. I know that Gail is working on some things and I will help in whatever way I know how.

I will say a prayer for you and your daughter.

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

hi!

I"m May new here from the PHILIPPINES

I am a mother of a 7 year old daughter who has a congenital scoliosis. I gave birth to only at home with a midwife. We've noticed that her right foot was not in a normal position as of the left. The midwife had it braced with only a piece of thick cardboard and a gauze diaper. After a week it went normal already.When she was in her 6th month, I've noticed that the blade of her shoulder is uneven, the right is lower than the left. When she started walking the same thing has been observed.

With the help of a friend, we see a doctor just to find out that she has a congenital scoliosis. Being a single mother, it's not very easy to face this reality specially because I am financially unstable. I brought her to a public hospital where she had her check ups every 6 months. We go there early in the morning and just bring enough food to eat while waiting for her name to be called. Sometimes it took us one whole day before we finish it because there are hundreds of patients falling in line for their check ups also.

She was braced before but later on the doctor says her spine did not respond to it. She has no permanent doctor everytime we go there. And until her last check up last December 2005, the doctor told us to just go back again in May. Another doctor said that I have to prepare for the surgery but that was almost two years ago. The just keep on looking at the x-ray results every 6 months but no other recommendation what other treatment should be done to her.

She already turned 7 last September but only looks like a 4 year old one. She's not increasing her height for 3 years now and I have fear that she might not become taller at all. What hurts me most is when I see her crying after school telling that she was teased by some of her classmates that she is a dwarf. She keeps on asking me why she's not normal just like any other kids.

I only got interested in researching about my daughter's case thru a friend who wanted to help me have it in an easier way besides I don't own a personal computer, I just rent equivalent to $1 an hour. How I wish we have lived in the U.S. or in any other country wherein we can ask some medical assistance for free.

In my quite times, praise and worship, I always ask the Lord to lead me towards a solution to my 's problem. I never give up hope, God knows that.

Sorry if sometimes my grammar is incorrect, I am not really knowledgeable enough because I have not finished my college, I really had a hard time composing this one just to share my story to all of you. Thank you so much for taking time reading my story. God bless you all......

Sincerely yous,

May

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

HI May, I wonder if you could go to your church and see if there is someone there who could help you get together the necessary paper work and passports. You need to find someone close to you who can help with the arrangements. You will need copies of May's xrays if you possibly can and also some photographs of May would help. Good luck and I am sure this could be the best chance for your little girl. Love Bertmay flor carbonilla <may_flor_nikki@...> wrote: Shellie, It may be very shameful to say that right now I don't have any amount to process for our passports and other papers necessary for the trip. I don't want to pretend that I have any which I have none. If I will not say these things to you how can we get there. I know I have asked too much already. But that is the truth and I am doing this for my daughter not for my personal interest. I hope you understand my situation. Sincerely, May Send instant messages to your online friends http://uk.messenger.

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[Guest guest]

photo photo2 photo3

[Guest guest]

Note: forwarded message attached.

Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

HI May, I wonder if you could go to your church and see if there is someone there who could help you get together the necessary paper work and passports. You need to find someone close to you who can help with the arrangements. You will need copies of May's xrays if you possibly can and also some photographs of May would help. Good luck and I am sure this could be the best chance for your little girl. Love Bertmay flor carbonilla <may_flor_nikki@...> wrote: Shellie, It may be very shameful to say that right now I don't have any amount to process for our passports and other papers necessary for the trip. I don't want to pretend that I have any which I have none. If I will not say these things to you how can we get there. I know I have asked too much already. But that is the truth and I am doing this for my daughter not for my personal interest. I hope you understand my situation. Sincerely, May Send instant messages to your online friends http://uk.messenger.

Bring words and photos together (easily) with PhotoMail - it's free and works with .

[Guest guest]

Hello May,

Thank you for your nice email. My family is doing well. Everyone

needs help some times I'm glad that you and are finely going

to get the help you need.

I would still like to send you 20$ or 30$ U.S. dollars. Maybe it

could help get your passports or pay for x-rays. How can I get it to

you? Is there a Western union where you are? Is there a different

service where people can receive money from oversees?

Please tell me how I can best help you and .

Best wishes,

>

> Shellie,

>

> It may be very shameful to say that right now I don't have

> any amount to process for our passports and other papers

> necessary for the trip. I don't want to pretend that I have any

> which I have none. If I will not say these things to you how can

> we get there.

> I know I have asked too much already. But that is the truth

> and I am doing this for my daughter not for my personal

> interest. I hope you understand my situation.

>

> Sincerely,

> May

>

> Send instant messages to your online friends

http://uk.messenger.

>

[Guest guest]

DSC-00465.jpg

DSC-00466.jpg

DSC-00467.jpg

[Guest guest]

photo photo2 photo3

[Guest guest]

Dear , Thank you so much for your concern, you really have a big heart it can surely help me get our passports. I also seek the help of my relatives and friends to complete the amount needed for the pictures, getting our birth certificates at the National Statistics Office and for the processing of the passports. Western Union is all I know from friends, and there is a branch that is two kilometers away from home. May I know your mailing address please so I can send you a card. This is what I do to people who are kind, this is my way of expressing my gratitude because you are very far away and I won't be able to see you in person. If just in case you are comfortable to do so. Warm regards to your family circle and God bless you always. In Christ, May Salinas <mamashu_youre_a_genius@...> wrote: Hello May,Thank you for your nice email. My family is doing well. Everyone needs help some times I'm glad that you and are finely going to get the help you need. I would still like to send you 20$ or 30$ U.S. dollars. Maybe it could help get your passports or pay for x-rays. How can I get it to you? Is there a Western union where you are? Is there a different service where people can receive money from oversees? Please tell me how I can best help you and .Best wishes, >> Shellie,> > It may be very shameful to say that right now I don't have > any amount to process for our passports and other papers> necessary for the trip. I don't want to pretend that I have any> which I have none. If I will not say these things to you how can> we get there.> I know I have asked too much already. But that is the truth> and I am doing this for my daughter not for my personal> interest. I hope you understand my situation.> > Sincerely,> May> > Send instant messages to your online friends http://uk.messenger.> Send instant messages to your online friends http://uk.messenger.

[Guest guest]

photo photo2 photo3