an update

[Guest guest]

Fantastic Tammie!

[Guest guest]

Fantastic Tammie!

[Guest guest]

Don't you just hate cellulitis!? We had 3 bouts of it last summer alone.

's knee seems to be okay at the moment, but the scrape looks nasty-I am

dosing him with antibacterial stuff and ointment several times a day to

hopefully let it heal w/o infection. How many times has had

cellulitis? Our immuno seems to think if we kept their trough levels above

1000 we'd be okay.

I'm sorry to hear you've got so many " issues " .thinking of you.. thanks for

the update. My guys take pancreatic enzymes, too for PI as part of their

Shwachman-Diamond Syndrome.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

Neither children are on IVIG. I wish I hadnt been so hesitant on

starting it when was nearly 3yo, but we were dealing then

with the testing for brain tumor and I found myself questioning the

immuno on his deciion, which was a huge mistake. There is only one

childens hospital here and our immuno was the head of the immuno dept

there. He didnt like my asking so many questions and had a horrible

attitude and pulled the IVIG a few days b4 was booked for

his first infusion. It seemed personal, and we tried switching

immunos afterwards but they all answer to this particular doctor and

it became very frustrating. Knowing would be straight on

IVIG if we moved home to the US makes things even harder. So we stay

away from high infection risk areas, it has become second nature to

check environments for any signs of infection- play dates,

classrooms, shopping centres, etc etc, use Aquium hand gel when out

and about, and I could go on and on. Prophylactic abx helps to some

extent, but the break through infections happen regardless,

pneumonias etc, and still battles with her sinus infections

and cellulitis.

_____

[Guest guest]

In a message dated 5/7/2006 6:32:49 P.M. Eastern Standard Time,

snooksmama@... writes:

( I sure am having a tough time typing 17! It just doesn't seem possible

that Rob is 17!)!

, I so know what you mean. Matt and s birthdays were Friday

(5/5) and they are 15 and 11! I cannot believe Matt is 15 and one year away from

driving!!!!!!!!!! Where does time go????

Donna

[Guest guest]

Hi , Here's hoping that now that they know what's up with Rob's

knee, and now that he's trying to strengthen it, it may come good. Or

at least a lot better.

Please pass on our thoughts and regards to Tree- do you have an

address where we can send another postcard from Oz?

Also, sending positive thoughts for 's mum, and all those who

have asked for prayers recently.

Jo

Bayly, 4, Extended Oligo (Tee Hee. I'm having trouble typing 4!!)

Hello!

> Rob's MRI came out that he has some scarring and a cyst in his right

> knee. The ped orthopedist said that it was probably due to an old

injury.

> The orthopedic and rehab doctor I work with wasn't so sure, and

thinks it > could be more related to his arthritis. At any rate, Rob

is wearing his > knee brace and trying not to put too much stress on

the knee, and doing > some exercises for strengthening it. We'll be

going back to Dr Passo next > month and see what he thinks.

> I talked to Tree yesterday. She had a long talk and visit with her

> pulmonologist. He says she must have the surgery done. The doctor

she > originally consulted with is excellent and will be doing the

surgery. > She'll have it done at Baptist East so the pulmonologist

can follow her > care, he is the one who successfully got her off the

ventilator last > year. > The pulmonologist is being upbeat and

thinks Tree will do fine. There is > a risk of complications of

course, and given her horrible experience last > year, we will need

to be praying for her. Tree's son, Matt, will graduate > from high

school the end of this month, so Tree is likely to have the

> surgery in June, though no date has been set yet.

> I'll keep you posted.

> Has anybody heard from S about how her mom is doing? I've been

> thinking of her so much today...

> and Rob 17 Spondy

> ( I sure am having a tough time typing 17! It just doesn't seem

possible > that Rob is 17!)!

[Guest guest]

Hi ,

Do they do anything about the cyst or just leave it. Is he wearing

the knee brace to work? Seems like with all the standing on those

hard floors that the brace would provide some needed support.

I will continue to pray for Tree. I am sure she must be really

nervous about the upcoming surgery, especially being high risk and

all. I imagine Matt's graduation will be a sureal experience for

her, considering how hard she had to fight to make it to that

special day!

(Aundrea 10 systemic)-

-- In , snooksmama@... wrote:

>

> Hello!

> Rob's MRI came out that he has some scarring and a cyst in his

right

> knee. The ped orthopedist said that it was probably due to an old

injury.

> The orthopedic and rehab doctor I work with wasn't so sure, and

thinks it

> could be more related to his arthritis. At any rate, Rob is

wearing his

> knee brace and trying not to put too much stress on the knee, and

doing

> some exercises for strengthening it. We'll be going back to Dr

Passo next

> month and see what he thinks.

> I talked to Tree yesterday. She had a long talk and visit with her

> pulmonologist. He says she must have the surgery done. The doctor

she

> originally consulted with is excellent and will be doing the

surgery.

> She'll have it done at Baptist East so the pulmonologist can

follow her

> care, he is the one who successfully got her off the ventilator

last

> year.

> The pulmonologist is being upbeat and thinks Tree will do fine.

There is

> a risk of complications of course, and given her horrible

experience last

> year, we will need to be praying for her. Tree's son, Matt, will

graduate

> from high school the end of this month, so Tree is likely to have

the

> surgery in June, though no date has been set yet.

> I'll keep you posted.

> Has anybody heard from S about how her mom is doing? I've been

> thinking of her so much today...

> and Rob 17 Spondy

> ( I sure am having a tough time typing 17! It just doesn't seem

possible

> that Rob is 17!)!

>

> " Have no fear for what tomorrow may bring. The same loving God who

cares

> for you today will take care of you tomorrow and every day. God

will

> either shield you from suffering or give you unfailing strength to

bear

> it. Be at peace, then, and put aside all anxious thoughts and

> imaginations. "

> -St Francis DeSales

>

[Guest guest]

Thanks for the update . I hope that Rob's knee is stronger soon. Glad that

he is wearing the knee brace and exercising; hopefully that will give him the

support he needs. I'll keep praying for Tree to do well with her surgery.

I know what you mean about typing that age - we have now moved up to 19! Yikes!

(but of course, we never age!) Michele ( 19, spondy)

An update

Hello!

Rob's MRI came out that he has some scarring and a cyst in his right

knee. The ped orthopedist said that it was probably due to an old injury.

The orthopedic and rehab doctor I work with wasn't so sure, and thinks it

could be more related to his arthritis. At any rate, Rob is wearing his

knee brace and trying not to put too much stress on the knee, and doing

some exercises for strengthening it. We'll be going back to Dr Passo next

month and see what he thinks.

I talked to Tree yesterday. She had a long talk and visit with her

pulmonologist. He says she must have the surgery done. The doctor she

originally consulted with is excellent and will be doing the surgery.

She'll have it done at Baptist East so the pulmonologist can follow her

care, he is the one who successfully got her off the ventilator last

year.

The pulmonologist is being upbeat and thinks Tree will do fine. There is

a risk of complications of course, and given her horrible experience last

year, we will need to be praying for her. Tree's son, Matt, will graduate

from high school the end of this month, so Tree is likely to have the

surgery in June, though no date has been set yet.

I'll keep you posted.

Has anybody heard from S about how her mom is doing? I've been

thinking of her so much today...

and Rob 17 Spondy

( I sure am having a tough time typing 17! It just doesn't seem possible

that Rob is 17!)!

" Have no fear for what tomorrow may bring. The same loving God who cares

for you today will take care of you tomorrow and every day. God will

either shield you from suffering or give you unfailing strength to bear

it. Be at peace, then, and put aside all anxious thoughts and

imaginations. "

-St Francis DeSales

[Guest guest]

Thanks for sharing all of your news . It sounds like your on the

edge of turning this whole business around.

Keep your faith and keep going!

Lucinda

Freels wrote:

> As group moderator, I haven't made a post here in several days for

> several reasons.

>

> First, we had our own hearing with Georgia Medicaid on June 15th

> which took an extraordinary amount of time to prepare for--and which

> I'm still working on. In addition to The Father, The Son, and The

> Holy Ghost, we were also fortunate enough to have three other

> internationally-recognized experts on the use of HBOT for cp provide

> expert witness testimony. because Georgia Medicaid used the AHRQ

> report to deny HBOT, their sworn testimony will be posted here soon

> and made freely available to all members as the AHRQ

> report is probably used as a frequent reason for denial.

>

> On a scale of 1 to 10, the strength of the state's case might have

> been a 1. On the same scale, ours was probably a 600. Maybe a 700. It

> was like a nuclear bomb went off on Georgia Medicaid. They were

> humiliated beyond recognition, though we won't know the judge's

> decision for another three months or so. Please pray for a favorable

> outcome.

>

> Two weeks later, by registered mail, we received a notice in the mail

> that our son Jimmy no longer qualifies for Georgia Medicaid. This has

> been interpreted as retaliation for the June 15th bomb and so we now

> have to prepare a hearing for this.

>

> I knew Georgia Medicaid had re-vamped Beckett eligibility

> requirements for Medicaid but frankly have not had time to pay

> attention to it because of all the HBOT stuff. The eligibility

> changes occurred after our 2002 Georgia State Court of Appeals

> decision, where it was ruled Georgia Medicaid cannot deny services/

> treatments to any child for any of the following four reasons:

>

> 1. It's not " medically necessary. "

> 2. It's not “the standard of medical practice.”

> 3. It's not covered by the state Medicaid plan.

> 4. It's " experimental and investigational. "

>

> The 2002 decision--just like Paragraph 5 is designed to do--empowers

> parents to find something, anything to help their child; however, for

> Georgia Medicaid, this is viewed as creating infinite and

> uncontrollable expenditures. So they've changed the eligibility

> requirements and now 85% of the kids have been thrown out.

>

> If anyone knows of media contacts, I'm ready to go on record with all

> this. Please contact me here.

>

> This week I'll be making the last presentation on at

> the 5th Symposium in Ft. Lauderdale. Come by if you've got an extra

> 15 minutes.

>

>

> Freels

> 2948 Windfield Circle

> Tucker, GA 30084-6714

> 770-491-6776 (phone)

> 404-725-4520 (cell)

> 815-366-7962 (fax)

> mailto:dfreels@...

>

> http://www.freelanceforum.org/df

>

>

>

>

>

[Guest guest]

As always.? Hang tight!

Val

an update

As many of you know I will celebrate my one year cancer free day on March 13

and I couldn't feel better but I am still nervous as I begin my screenings.

Already, my gyn has felt " something " of concern on a routine pap and I go for an

ultrasound on Tuesday. Seems my uterus is enlarged and I know I am NOT

pregnant (thank goodness). I am a bit nervous but confident and positive but an

extra prayer or two would be appreciated....hangin tight!

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

[Guest guest]

Keeping you in prayer, as always!

Sending prayers & happy thoughts,

Beth :-)

an update

As many of you know I will celebrate my one year cancer free day on March 13

and I couldn't feel better but I am still nervous as I begin my screenings.

Already, my gyn has felt " something " of concern on a routine pap and I go for an

ultrasound on Tuesday. Seems my uterus is enlarged and I know I am NOT

pregnant (thank goodness). I am a bit nervous but confident and positive but an

extra prayer or two would be appreciated. ...hangin tight!

Donna<BR><BR> <BR>***** ********* <BR>Ideas to please picky eaters. Watch video

on AOL Living.<BR>

(http://living. aol.com/video/ how-to-please- your-picky- eater/rachel-

campos-duffy/ 2050827?NCID= aolcmp0030000000 2598)</HTML>

[Guest guest]

you got it..already said(prayer)

Hang in there.

hugs, cynde

an update

As many of you know I will celebrate my one year cancer free day on March 13

and I couldn't feel better but I am still nervous as I begin my screenings.

Already, my gyn has felt " something " of concern on a routine pap and I go for

an

ultrasound on Tuesday. Seems my uterus is enlarged and I know I am NOT

pregnant (thank goodness). I am a bit nervous but confident and positive but

an

extra prayer or two would be appreciated....hangin tight!

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video

on AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

[Guest guest]

Donna,

Please keep us informed of the outcome. Well feeling something there could

be a little Donna coming :-).

You know me I had to say that girlfriend :-). Keep your head high and do not

take anything laying down as you have shown us. Your a Very Special Person

Robbin and

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Donna,

sending prayers that you may always remain cancer free...

ajaoky@... wrote: As many of you know I will

celebrate my one year cancer free day on March 13

and I couldn't feel better but I am still nervous as I begin my screenings.

Already, my gyn has felt " something " of concern on a routine pap and I go for

an

ultrasound on Tuesday. Seems my uterus is enlarged and I know I am NOT

pregnant (thank goodness). I am a bit nervous but confident and positive but an

extra prayer or two would be appreciated....hangin tight!

Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch video on

AOL Living.<BR>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/\

2050827?NCID=aolcmp00300000002598)</HTML>

[Guest guest]

Hugs Donna!! ((((((((( )))))))))

Breathe deeply and know I'm thinking of you!

On Fri, Feb 22, 2008 at 8:41 PM, nancy barnes <nancyb315@...> wrote:

> Donna,

>

> sending prayers that you may always remain cancer free...

>

>

>

> ajaoky@... <ajaoky%40aol.com> wrote: As many of you know I will

> celebrate my one year cancer free day on March 13

> and I couldn't feel better but I am still nervous as I begin my

> screenings.

> Already, my gyn has felt " something " of concern on a routine pap and I go

> for an

> ultrasound on Tuesday. Seems my uterus is enlarged and I know I am NOT

> pregnant (thank goodness). I am a bit nervous but confident and positive

> but an

> extra prayer or two would be appreciated....hangin tight!

> Donna<BR><BR><BR>**************<BR>Ideas to please picky eaters. Watch

> video on AOL Living.<BR>

>

> (

>

http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/2\

050827?NCID=aolcmp00300000002598

> )</HTML>

>

>

[Guest guest]

I'm glad to hear that you're on the mend. Congrats on graduating with Honors! I

hope to do the same when I graduate with my Bachelor's degree in social work

this December. I'm currently maintaining a 3.5 GPA (which is down from a 3.7

because of the classes I failed last semester due to problems I was having

controlling my bipolar disorder), so if I can earn an " A " in my final 2 courses,

I should be good to go! I've just been put on 2 additional meds for my bipolar

and so far, they are working like a charm. Anyways, enough about me. Please let

us know how your big day goes!

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

[Guest guest]

Continue to get well, & congrats on your graduation.

[Guest guest]

Congratulations on your graduation, Jean.

Ted F.

>

> hello everyone! as all of you know i was in a car accident feb 21. as a result

i obtained a broken sternum and my knee was injured. well the sternum is just

about healed but the knee may need surgery yea me. my boyfriend finally got

compansation for his truck and he purchased another one sunday. hopefully ill

get a good compansation for what i have been through. oh and one more thing may

21st i will walk across the stage! i dont know all detail yet but i am

graduating with honors! well thats all for now ill check in with you guys again

soon! your freind jean

>

[Guest guest]

Hello - I am glad that after supporting your adrenals

you started to feel so much better but it is such a shame that this annoying caught

has brought back your symptoms of Candida because of the antibiotics. How

did you feel after your levothyroxine was lowered. Your doctor should go by how

you feel and not by blood test results though. If you start to feel thyroid

symptoms returning, you may wish to increase to the dose that made you feel

better.

Ask your GP for your last two thyroid gland function tests

together with the following results (if they were done): Ferritin, folate, vitamin

B12, vitamin D3, magnesium, zinc and copper. Just get the figures together

with the reference range for each test and post them here.

Luv - Sheila

Concerning your very kind offer to look at my blood test results for me: I

don't know what to do. I have a very long list of tests by now and I am

concerned about wasting your time. Should I give you a list so you can pick out

what you want to see? Can I send them to you as a PDF, or is there a better way

to do it?

Many thanks and best wishes,

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.86/2533 - Release Date: 11/28/09

19:34:00

[Guest guest]

Dear members of this group

We are very grateful to

for all of the work he has done in setting up this Group, and all

of the other .

I am working hard to find out what

our options are. I hope to be able to tell you about my findings by Monday

afternoon.

It is always a good idea to

collect information before making a decision – so following on from that

good well-trusted philosophy please give me a bit of time to look into things

in more detail. I only heard about all of this when I looked at my email

this morning, and because of the time difference between England and USA, it

can take a little longer than normal to get to the bottom of things.

Regards

Shireen Mohandes

London, England.

[Guest guest]

Dear Shireen,

I welcome your approach to E-mail. I'm gratefull, and think so will be the other members, if you investigate the pro's and con's. Please take your time, we'r not in a hurry ;-))) And... thanks in advance!

Salut,

Dolph Heideman

blepharophimosis an update

Dear members of this group

We are very grateful to for all of the work he has done in setting up this Group, and all of the other .

I am working hard to find out what our options are. I hope to be able to tell you about my findings by Monday afternoon.

It is always a good idea to collect information before making a decision – so following on from that good well-trusted philosophy please give me a bit of time to look into things in more detail. I only heard about all of this when I looked at my email this morning, and because of the time difference between England and USA, it can take a little longer than normal to get to the bottom of things.

Regards

Shireen Mohandes

London, England.