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WOW! That must be an awesome feeling! I am so happy for you. What

a relief! I hope my appeal gets us payment (fingers crossed)

& Lea

> Cigna paid for Luke's helmet!! The check was mailed 11/20 !!

> Yay!

>

>

> Kelli & Luke (1yr.old ~ 6wks. in local helmet)

> Indiana

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  • 5 months later...
Guest guest

Kathleen:

YAY!!! I'm so happy to read this. You're just beginning, this is a great start and a good sign of more rounding to come.

Sounds like a great idea of CT to list of band ped. advocates, very good idea.

Keep us posted, thanks for your great update :)

Debbie Abby's mom DOCGrad

MI

tbell_pickens <dtrapp2000@...> wrote:

Hi everyone,I'm excited to report that Max had his CT visit yesterday (we're almost at six weeks) and our clinician is pleased with his progress. Max was banded at 8.5 months so the progress is slower, nevertheless, there is progress. I explained my frustration with our ex-ped and CT is going to put together a list of peds in our area who advocate for the band. At least this will be a starting point in finding a new ped. This has been an extremely difficult time and I don't want to hear negativity regarding the band especially from Max's doctor! As I mentioned in an earlier post...this has been like a roller coaster ride. For everyone in the beginning stages of the process, it does get better. I can relate so well to the frustration, fear and sadness that so many of you have written about. Some days are good and some not so good but one thing never changes...I believe in all that we are doing for our children...we will never look back with regret. We will know that we did everything possible for our little ones. I respect all of you so very much...I learn from your posts and gather strength knowing this support network is here. All of my prayers and good wishes to families and little ones who are on the banding/helmet journey. We will get there one step at a time :) Kathleen (Max's mom) For more plagio info

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Guest guest

Hi Kathleen,

Thanks for sharing your good news. Please let us know how you make

out with the new ped.

> Hi everyone,

>

> I'm excited to report that Max had his CT visit yesterday (we're

> almost at six weeks) and our clinician is pleased with his

progress.

> Max was banded at 8.5 months so the progress is slower,

nevertheless,

> there is progress. I explained my frustration with our ex-ped and

CT

> is going to put together a list of peds in our area who advocate

for

> the band. At least this will be a starting point in finding a new

> ped. This has been an extremely difficult time and I don't want to

> hear negativity regarding the band especially from Max's doctor!

>

> As I mentioned in an earlier post...this has been like a roller

> coaster ride. For everyone in the beginning stages of the process,

> it does get better. I can relate so well to the frustration, fear

> and sadness that so many of you have written about. Some days are

> good and some not so good but one thing never changes...I believe

in

> all that we are doing for our children...we will never look back

with

> regret. We will know that we did everything possible for our

little

> ones. I respect all of you so very much...I learn from your posts

> and gather strength knowing this support network is here.

>

> All of my prayers and good wishes to families and little ones who

are

> on the banding/helmet journey. We will get there one step at a

> time :)

>

> Kathleen (Max's mom)

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In a message dated 4/29/2003 8:05:04 PM Eastern Daylight Time, dtrapp2000@... writes:

Some days are

good and some not so good but one thing never changes...I believe in

all that we are doing for our children...we will never look back with

regret. We will know that we did everything possible for our little

ones. I respect all of you so very much...I learn from your posts

and gather strength knowing this support network is here.

Kathleen,

What great words of wisdom! Thanks so much for your kind thoughts, I felt the same way when i signed on and it does help to have others know exactly where you are coming from. Hang in there, you will start having a lot more good days as your nearing graduation, and those bad days will all be worth the effort. Good luck and I can't wait to read your next latest and greatest update on Max!

'mom

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Guest guest

Kathleen, that is wonderful that CT is going to get that list

together. I tell you what, I think that every CT just goes above and

beyond their call of duty. Kudos to them!!

Glad to hear Max is doing so well!

Dustie

> Hi everyone,

>

> I'm excited to report that Max had his CT visit yesterday (we're

> almost at six weeks) and our clinician is pleased with his

progress.

> Max was banded at 8.5 months so the progress is slower,

nevertheless,

> there is progress. I explained my frustration with our ex-ped and

CT

> is going to put together a list of peds in our area who advocate

for

> the band. At least this will be a starting point in finding a new

> ped. This has been an extremely difficult time and I don't want to

> hear negativity regarding the band especially from Max's doctor!

>

> As I mentioned in an earlier post...this has been like a roller

> coaster ride. For everyone in the beginning stages of the process,

> it does get better. I can relate so well to the frustration, fear

> and sadness that so many of you have written about. Some days are

> good and some not so good but one thing never changes...I believe

in

> all that we are doing for our children...we will never look back

with

> regret. We will know that we did everything possible for our

little

> ones. I respect all of you so very much...I learn from your posts

> and gather strength knowing this support network is here.

>

> All of my prayers and good wishes to families and little ones who

are

> on the banding/helmet journey. We will get there one step at a

> time :)

>

> Kathleen (Max's mom)

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Guest guest

Kathleen,

Sounds like a great check-up with CT! I'm so glad to hear that progress is

being made - hooray!!

Good luck finding a new ped. I can really understand how you would want to

switch!

Keep us posted.

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " tbell_pickens " <dtrapp2000@y...>

wrote:

> Hi everyone,

>

> I'm excited to report that Max had his CT visit yesterday (we're

> almost at six weeks) and our clinician is pleased with his progress.

> Max was banded at 8.5 months so the progress is slower, nevertheless,

> there is progress. I explained my frustration with our ex-ped and CT

> is going to put together a list of peds in our area who advocate for

> the band. At least this will be a starting point in finding a new

> ped. This has been an extremely difficult time and I don't want to

> hear negativity regarding the band especially from Max's doctor!

>

> As I mentioned in an earlier post...this has been like a roller

> coaster ride. For everyone in the beginning stages of the process,

> it does get better. I can relate so well to the frustration, fear

> and sadness that so many of you have written about. Some days are

> good and some not so good but one thing never changes...I believe in

> all that we are doing for our children...we will never look back with

> regret. We will know that we did everything possible for our little

> ones. I respect all of you so very much...I learn from your posts

> and gather strength knowing this support network is here.

>

> All of my prayers and good wishes to families and little ones who are

> on the banding/helmet journey. We will get there one step at a

> time :)

>

> Kathleen (Max's mom)

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  • 3 months later...

Hurrah Judi. So glad it's good news.

Noreen

[ ] Good News!

Hi group,

Believe it or not, I actually got the results of my PET scan today,

first hand from the radiologist. He and my doctor called me over to

the hospital, where I had to have another ct scan. They diagnosed a

granuloma of the lung caused by histoplasmosis. Nothing too serious

or fatal, and no treatment necessary at this time. They want me to

have regular xrays & ct scan every 6 months for awhile to make sure

there is no progression, but they are very hopeful. The PET scan did

not show up the lipomas, darn it, but guess that's ok for now. I am

supposed to wear a mask whenever I'm in the yard, or out in the

country where there may be bird/bat droppings.

It's a heads up for anyone who gardens and/or has bird feeders. My

garden is right next to the bird feeder, and directly under 2 very

large trees. Apparently it is a very common thing, so something for

people to be aware of, as it can sometimes cause very serious medical

problems.

The surgeon did a quick check of new lipomas, and is going to

schedule the next round of removals for November to give me some more

freedom of movement in my hips.

I also saw the e-n-t this morning, who found nothing visibly wrong

with my sinuses, but thinks there may be a neuralgia as it only is

causing problems on one side of my nose & face, so he's refering me

to a neurologist (same one Ron sees) and has me scheduled for allergy

tests. Geez, they're getting me from all sides!

Anyway, thanks to everyone for your prayers and encouragement--I have

no doubt that the prayers work. And now, off to celebrate our

anniversary some more!

Peace and grace,

Judi

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Celebration!

Becky

[ ] Good News!

Hi group,

Believe it or not, I actually got the results of my PET scan today,

first hand from the radiologist. He and my doctor called me over to

the hospital, where I had to have another ct scan. They diagnosed a

granuloma of the lung caused by histoplasmosis. Nothing too serious

or fatal, and no treatment necessary at this time. They want me to

have regular xrays & ct scan every 6 months for awhile to make sure

there is no progression, but they are very hopeful. The PET scan did

not show up the lipomas, darn it, but guess that's ok for now. I am

supposed to wear a mask whenever I'm in the yard, or out in the

country where there may be bird/bat droppings.

It's a heads up for anyone who gardens and/or has bird feeders. My

garden is right next to the bird feeder, and directly under 2 very

large trees. Apparently it is a very common thing, so something for

people to be aware of, as it can sometimes cause very serious medical

problems.

The surgeon did a quick check of new lipomas, and is going to

schedule the next round of removals for November to give me some more

freedom of movement in my hips.

I also saw the e-n-t this morning, who found nothing visibly wrong

with my sinuses, but thinks there may be a neuralgia as it only is

causing problems on one side of my nose & face, so he's refering me

to a neurologist (same one Ron sees) and has me scheduled for allergy

tests. Geez, they're getting me from all sides!

Anyway, thanks to everyone for your prayers and encouragement--I have

no doubt that the prayers work. And now, off to celebrate our

anniversary some more!

Peace and grace,

Judi

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Fantastic news, Judi! And happy anniversary to you and Ron!

[ ] Good News!

> Hi group,

>

> Believe it or not, I actually got the results of my PET scan today,

> first hand from the radiologist. He and my doctor called me over to

> the hospital, where I had to have another ct scan. They diagnosed a

> granuloma of the lung caused by histoplasmosis. Nothing too serious

> or fatal, and no treatment necessary at this time. They want me to

> have regular xrays & ct scan every 6 months for awhile to make sure

> there is no progression, but they are very hopeful. The PET scan did

> not show up the lipomas, darn it, but guess that's ok for now. I am

> supposed to wear a mask whenever I'm in the yard, or out in the

> country where there may be bird/bat droppings.

>

> It's a heads up for anyone who gardens and/or has bird feeders. My

> garden is right next to the bird feeder, and directly under 2 very

> large trees. Apparently it is a very common thing, so something for

> people to be aware of, as it can sometimes cause very serious medical

> problems.

>

> The surgeon did a quick check of new lipomas, and is going to

> schedule the next round of removals for November to give me some more

> freedom of movement in my hips.

>

> I also saw the e-n-t this morning, who found nothing visibly wrong

> with my sinuses, but thinks there may be a neuralgia as it only is

> causing problems on one side of my nose & face, so he's refering me

> to a neurologist (same one Ron sees) and has me scheduled for allergy

> tests. Geez, they're getting me from all sides!

>

> Anyway, thanks to everyone for your prayers and encouragement--I have

> no doubt that the prayers work. And now, off to celebrate our

> anniversary some more!

>

> Peace and grace,

> Judi

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I'm so glad you got the results so quickly so you're not worrying over it.

So happy for your great news. I can't think of a better anniversary gift.

a

> Hi group,

>

> Believe it or not, I actually got the results of my PET scan today,

> first hand from the radiologist. He and my doctor called me over to

> the hospital, where I had to have another ct scan. They diagnosed a

> granuloma of the lung caused by histoplasmosis. Nothing too serious

> or fatal, and no treatment necessary at this time. They want me to

> have regular xrays & ct scan every 6 months for awhile to make sure

> there is no progression, but they are very hopeful. The PET scan did

> not show up the lipomas, darn it, but guess that's ok for now. I am

> supposed to wear a mask whenever I'm in the yard, or out in the

> country where there may be bird/bat droppings.

>

> It's a heads up for anyone who gardens and/or has bird feeders. My

> garden is right next to the bird feeder, and directly under 2 very

> large trees. Apparently it is a very common thing, so something for

> people to be aware of, as it can sometimes cause very serious medical

> problems.

>

> The surgeon did a quick check of new lipomas, and is going to

> schedule the next round of removals for November to give me some more

> freedom of movement in my hips.

>

> I also saw the e-n-t this morning, who found nothing visibly wrong

> with my sinuses, but thinks there may be a neuralgia as it only is

> causing problems on one side of my nose & face, so he's refering me

> to a neurologist (same one Ron sees) and has me scheduled for allergy

> tests. Geez, they're getting me from all sides!

>

> Anyway, thanks to everyone for your prayers and encouragement--I have

> no doubt that the prayers work. And now, off to celebrate our

> anniversary some more!

>

> Peace and grace,

> Judi

>

>

>

>

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(((((((((((((((((Judi!!!!!!!!!!!!!))))))))))))))))

Oh thank goodness - what great news!!! (Dancing a happy jig - I was so worried

when I read your post - very after the fact unfortunately! I'm so glad that I

found the happy outcome on the same day though! Sorry that you still have to

keep up the doctor visits though - you must be getting sick of them all!

((((((((((Happy aniversary to you and Ron!!)))))))))))))))

lots of love,

Heidi

[ ] Good News!

Hi group,

Believe it or not, I actually got the results of my PET scan today,

first hand from the radiologist. He and my doctor called me over to

the hospital, where I had to have another ct scan. They diagnosed a

granuloma of the lung caused by histoplasmosis. Nothing too serious

or fatal, and no treatment necessary at this time. They want me to

have regular xrays & ct scan every 6 months for awhile to make sure

there is no progression, but they are very hopeful. The PET scan did

not show up the lipomas, darn it, but guess that's ok for now. I am

supposed to wear a mask whenever I'm in the yard, or out in the

country where there may be bird/bat droppings.

It's a heads up for anyone who gardens and/or has bird feeders. My

garden is right next to the bird feeder, and directly under 2 very

large trees. Apparently it is a very common thing, so something for

people to be aware of, as it can sometimes cause very serious medical

problems.

The surgeon did a quick check of new lipomas, and is going to

schedule the next round of removals for November to give me some more

freedom of movement in my hips.

I also saw the e-n-t this morning, who found nothing visibly wrong

with my sinuses, but thinks there may be a neuralgia as it only is

causing problems on one side of my nose & face, so he's refering me

to a neurologist (same one Ron sees) and has me scheduled for allergy

tests. Geez, they're getting me from all sides!

Anyway, thanks to everyone for your prayers and encouragement--I have

no doubt that the prayers work. And now, off to celebrate our

anniversary some more!

Peace and grace,

Judi

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  • 1 year later...
Guest guest

I did the happy dance for you!!!! I am very happy that you are able to get some

help.

You will remain in my prayers.

Trudy

tdianaok <tdianaok@...> wrote:

I just found out that I'm approved on the patient's assistance program

to get the Lidoderm patches. I'm so glad, if I could I would do the

happy dance,lol I'm having a rough time right now, just so much

pain. The Loratab that I take does not help at all.

I just hope all the paper work goes through quickly, and I can get the

patches like now.

I just pray that I will get some relief from the patches. If not, I am

thinking about the surgery, I can't deal with this pain for much

longer. Just know that I'm still thinking of everyone, even though

I'm not posting much, Tawny

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Guest guest

Tawny,

I hope you get the patches very soon. I know that I

don't post that often but I have been trying to keep

up with all the posts. I hope you will be out of pain

soon. You are in my prayers.

Beth in Arkansas

--- tdianaok <tdianaok@...> wrote:

> I just found out that I'm approved on the patient's

> assistance program

> to get the Lidoderm patches. I'm so glad, if I could

> I would do the

> happy dance,lol I'm having a rough time right now,

> just so much

> pain. The Loratab that I take does not help at all.

> I just hope all the paper work goes through quickly,

> and I can get the

> patches like now.

> I just pray that I will get some relief from the

> patches. If not, I am

> thinking about the surgery, I can't deal with this

> pain for much

> longer. Just know that I'm still thinking of

> everyone, even though

> I'm not posting much, Tawny

>

>

>

____________________________________________________

Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.

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Guest guest

Thanks Judi:)

> Dear Tawny,

>

> That's great!! I hope when you get them (and soon) they help you.

> It's time you got some relief.

>

> Thinking about you,

> Judi

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Guest guest

That's GREAT Tawny!! I hope they come quickly and work well, so that

you can get some much deserved relief.

a

On Jun 22, 2005, at 6:19 PM, tdianaok wrote:

> I just found out that I'm approved on the patient's assistance program

> to get the Lidoderm patches. I'm so glad, if I could I would do the

> happy dance,lol  I'm having a rough time right now, just so much

> pain.  The Loratab that I take does not help at all.

> I just hope all the paper work goes through quickly, and I can get the

> patches like now. 

> I just pray that I will get some relief from the patches. If not, I am

> thinking about the surgery, I can't deal with this pain for much

> longer.  Just know that I'm still thinking of everyone, even though

> I'm not posting much, Tawny

>

>

>

>

>

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Guest guest

Thanks so much a:)

>

> > I just found out that I'm approved on the patient's assistance

program

> > to get the Lidoderm patches. I'm so glad, if I could I would do

the

> > happy dance,lol  I'm having a rough time right now, just so much

> > pain.  The Loratab that I take does not help at all.

> > I just hope all the paper work goes through quickly, and I can

get the

> > patches like now. 

> > I just pray that I will get some relief from the patches. If

not, I am

> > thinking about the surgery, I can't deal with this pain for much

> > longer.  Just know that I'm still thinking of everyone, even

though

> > I'm not posting much, Tawny

> >

> >

> >

> >

> >

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Guest guest

Tawny:

I am so happy to hear that you're going to get the meds you need! You

have had such a rotten time lately, and you truly do deserve this

break. Hang in there....things will only get better.

Is the Lidoderm patch similar to the Fentanyl patch??? Just curious.

Take care,

--- In , " tdianaok " <tdianaok@y...>

wrote:

> I just found out that I'm approved on the patient's assistance program

> to get the Lidoderm patches. I'm so glad, if I could I would do the

> happy dance,lol I'm having a rough time right now, just so much

> pain. The Loratab that I take does not help at all.

> I just hope all the paper work goes through quickly, and I can get the

> patches like now.

> I just pray that I will get some relief from the patches. If not, I am

> thinking about the surgery, I can't deal with this pain for much

> longer. Just know that I'm still thinking of everyone, even though

> I'm not posting much, Tawny

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Guest guest

,

This is the first patch I have used, so not sure if it's like

Fentanyl patch. It sure takes the edge off the pain, and that is sure

welcoming, Tawny

> > I just found out that I'm approved on the patient's assistance

program

> > to get the Lidoderm patches. I'm so glad, if I could I would do

the

> > happy dance,lol I'm having a rough time right now, just so much

> > pain. The Loratab that I take does not help at all.

> > I just hope all the paper work goes through quickly, and I can

get the

> > patches like now.

> > I just pray that I will get some relief from the patches. If not,

I am

> > thinking about the surgery, I can't deal with this pain for much

> > longer. Just know that I'm still thinking of everyone, even

though

> > I'm not posting much, Tawny

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  • 7 months later...

Way to go, Lori!!! Best of luck to you!I'm in my third week with positive (good) signs. I'm goung to ride this out. Smiles Edlmauro143 <lmauro143@...> wrote: Hi Guys!I have been on LDN for just over a month now, and I am very happy to report that I have turned that corner and I am feeling sooooo much better now. After 5 days on LDN I went into a full exaserbation and was feeling LOUSY for about 10 days. I had everything from weakness in both arms to numbess on the left side of my bottom including face and tongue, stiffness, pain, headache, you name it. But little by little it started to fade, and I am COMPLETELY symptom free today. I truly believe in LDN. I have actually been going through an

exaserbation for 3 months now, and I had started to get better just prior to starting LDN. So, I was a little frightened when I went backwards again. So, for all of you out there who are just beginning, please don't let a relapse scare you. I do believe that it can be part of it in the beginning. Thanks for the support from the group! I will keep you posted! Let's pray that everyone starts to turn that corner soon. God Bless you all!!Lori

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-

Thanks Lori for your post. I am only on ldn for 1 month and am

having a hard time with side effects. This gives me hope!! Jeanief

-- In low dose naltrexone , Ed Rojewski <edroj2@...>

wrote:

>

> Way to go, Lori!!!

> Best of luck to you!

> I'm in my third week with positive (good) signs. I'm goung to ride

this out.

>

> Smiles

>

> Ed

> lmauro143 <lmauro143@...> wrote:

> Hi Guys!

>

> I have been on LDN for just over a month now, and I am very happy

to

> report that I have turned that corner and I am feeling sooooo much

> better now. After 5 days on LDN I went into a full exaserbation

and

> was feeling LOUSY for about 10 days. I had everything from

weakness in

> both arms to numbess on the left side of my bottom including face

and

> tongue, stiffness, pain, headache, you name it. But little by

little

> it started to fade, and I am COMPLETELY symptom free today. I

truly

> believe in LDN. I have actually been going through an

exaserbation for

> 3 months now, and I had started to get better just prior to

starting

> LDN. So, I was a little frightened when I went backwards again.

So,

> for all of you out there who are just beginning, please don't let

a

> relapse scare you. I do believe that it can be part of it in the

> beginning. Thanks for the support from the group! I will keep

you

> posted! Let's pray that everyone starts to turn that corner

soon. God

> Bless you all!!

>

> Lori

>

>

>

>

>

>

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  • 2 years later...

Hi Everyone,

Just two things I want to share: My confirmation And my choir group voting...sorry for the delay on the reply for the voting.

I wanted to let you know that tomarrow I'll be confirmed as a member at my church at the 11:30am service. I attend the Cuyahoga Valley Community Church (CVCC) which is a good outreach church to the community. I decided to become a member because of a family that had met me through an article about our support group I posted with the Sun Paper a few years ago. The father of the family told me that he had been attending CVCC but didn't find enough support for his family. The church strives to be supportive, but as you know, the best support comes from those who know autism well. So this is why I decided to become a full time member so that I can be of support to families in the church as well as here in our group. So if you attend CVCC at 11:30am I'll be there and looking forward to the confirmation.

Sorry i didn't get back to you on the voting for our choir group.

Here's the info on it:

My Church choir went to Fox 8 a few weeks ago and sang on the Morning Show. I was on the far left end on the second row. If you would like, you can Vote for my Choir in the Fox 8 Morning Glory contest and see our video clip! See the Cuyahoga Valley Worship Choir. Just click the link below to vote. Just one vote per person is fine.

After clicking on the link below, we're the second photo down, just click the dot next to our photo. Scroll down to the bottom and follow the instructions to complete the vote. To see our video clip see the link below the first link:

http://wjw.4wmt.com/?go=glory1

Video Clip:

to see our video:

Fox 8 News In The Morning's Morning Glory Gospel Choir Contest - MAIN

Thanks Again!

Very Truly Yours,

n

DMHelmick7@...

- Northeast Ohio Autism Family Support, Networking and Resource

is a family/parent support and resource group in Northeast Ohio. Parents can join together and discuss issues regarding their children with autism. posts upcoming events, workshops and activities for families in Northeast Ohio. Join us for a good parent discussion or join a chat. If you're not already a member of our group Just click the link on "Join this Group" on the site. ~~~ ~~~ ~~~

Look for news on the upcoming Chili Cook-off fundraiser. The ASGC Annual Chili Cook-off will be on April 2nd this year. Details will be posted soon.

~~~ ~~~ ~~~

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  • 1 year later...
Guest guest

WAY HAPPY FOR YOU & YOUR SON!! CONGRATS...tracey

From: Lori Mattheiss <mattheiss137@...>

Subject: Good News!

Date: Thursday, April 22, 2010, 1:49 PM

 

My son will NOT have to be serial casted. Not now anyway. Went to the

physiatrist this morning and his range of motion has actually increased

since January not decreased. His feet are bad but he doesn't feel the casts

would help that much if he just does his stretching correctly 3-4 days a

week that will benefit enough. I am so happy!

Lori

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