Update on

[Guest guest]

Wish it was 50. But it is 30 yrs. My kids almost brought us in for show and tell in school ;-). Even with all the ups and downs the last couple of yrs I wouldn't trade him in :-)

Gail

Re: Update on

Congratulations on celebrating 50 years!?? My husband and I justcelebrated 25 years of marriage in June, with our 14 year old daughterand 18 year old son!!! So glad to be a live to celebrate with family.~guinPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

That's a good girl. TURK

Re: Update on

Congratulations on celebrating 50 years!?? My husband and I justcelebrated 25 years of marriage in June, with our 14 year old daughterand 18 year old son!!! So glad to be a live to celebrate with family.~guinPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Sandi,

That is fantastic -- it sounds like everything went extremely well. I am

so happy for you and . Now we will pray for his recovery at home.

--Martha

[Guest guest]

In a message dated 7/23/03 5:16:53 AM Pacific Daylight Time,

K979@... writes:

> Now we will pray for his recovery at home.

Thanks Martha!! You'll appreciate this--yesterday while the central line was

still in, I insisted on a white count!! Bri's Cardio assured me that it had

been fine the day before, and would be fine that day so there was no need to

repeat it. I told him that I knew that intellectually, but the Mom in me

needed a number!! Apparently, during this time, he spoke with who assured

him

it was a good call on my part!! Darn, I thought I won that argument on it's

own merits--but stepped in!! Anyway, it was normal, and I feel better.

We're still not quite out of the woods--but it's looking good. They did an

echo yesterday and there was no fluid anywhere!! His heart has reduced in size

dramatically.

Sandi

[Guest guest]

In a message dated 7/23/03 1:57:49 PM Pacific Daylight Time,

tanya.claridge@... writes:

> He is an amazing child!! Take it easy!

Thanks, !!

Sandi

[Guest guest]

In a message dated 7/23/03 4:14:00 PM Pacific Daylight Time, BROSE@...

writes:

> I am so glad to hear that you and are now home and doing very well.

> Keep on that road to a speedy full recovery.

Thank you, Belinda. I so appreciate your prayers. would be running

around all day if I let him. No naps, either!!!! This should be very

interesting as he still must rest in order to recover!! I get to be bad cop, I

guess

Sandi

[Guest guest]

Sandi:

I was thinking about and sending prayers your way. Glad to hear all

went well!! Good luck keeping him calm and quiet!!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

Sandi:

I was thinking about and sending prayers your way. Glad to hear all

went well!! Good luck keeping him calm and quiet!!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4-1/2,

GERD, dairy intolerant -- currently has polysaccharide antibody def, previously

had transient IgG, IgA, t-cell & other defs)

[Guest guest]

He is an amazing child!! Take it easy!

Mum to Jay (8), (4) (PID, IVIG and EGE, Neocate via G-Tube!)and

Max (2 weeks...ALREADY!)

> Hi Everyone,

> had his open heart surgery last Friday--July 18. I

brought him home

> with me tonight!! He has astounded everyone at the hospital,

including his

> Mom!! I am so very proud of him.

> I wanted to say thank you to all who prayed for him. I could

literally

> feel the prayers in the hospital. Now I think we'll both take it

easy and mend a

> bit!!

>

>

> Sandi--Mom to , age 10. Immune Deficiency, Tetrology of

Fallot, Mitral

> Valve stenosis, chronic sinusitis, chronic ear infections, asthma,

severe

> allergies, GERD, Pulmonary Valve Transplant.

>

>

>

[Guest guest]

In a message dated 7/23/03 5:50:59 PM Pacific Daylight Time,

bunneegirl@... writes:

> I was thinking about and sending prayers your way. Glad to hear all

> went well!! Good luck keeping him calm and quiet!!

Thanks, . He absolutely insisted that he didn't need a nap today. He's

been asleep for two hours now because I made him lay down!! This morning, he

purposely didn't wake me up when he got up and he was even doing experiments

with a science kit!! Tomorrow, I'm going to set the alarm!! Please still

pray that he remains infection free.

Sandi

[Guest guest]

Sandy,

I am so glad to hear that you and are now home and doing very well.

Keep on that road to a speedy full recovery.

Belinda Rose,

Mom to Allyssa and Cassie (8), igg immunodeficient, asthma, sinusitis, IVIG

for 6 years, heart condition

[Guest guest]

In a message dated 7/24/03 4:25:35 PM Pacific Daylight Time,

lighthouse68@... writes:

> What awesome news. Made my day!

>

Thanks, Wenoka. I now have to do " Patrol " all day, to keep him from

overdoing it!! His appetite seems to really be bouncing back, too.

Sandi

[Guest guest]

What awesome news. Made my day!

Wenoka

At 01:47 AM 07/23/2003 EDT, you wrote:

> Hi Everyone,

> I brought him home

> He has astounded everyone at the hospital, including his

> I am so very proud of him.

> I could literally

> Now I think we'll both take it easy and mend a

> bit!!

[Guest guest]

In a message dated 7/25/03 1:25:31 PM Pacific Daylight Time,

pmork@... writes:

> Praise God for prayers answered.

Yes!!! Thanks, Pam!!

Sandi

[Guest guest]

In a message dated 7/25/03 1:25:31 PM Pacific Daylight Time,

pmork@... writes:

> Praise God for prayers answered.

Yes!!! Thanks, Pam!!

Sandi

[Guest guest]

Praise God for prayers answered.

Pam

wife to (16 years)

mother to , 9, Hannah, 7, Rebekah, 3, and Leah, 2

[Guest guest]

- sounds like a plan to me. Do you think your Immuno will be receptive to

starting infusions? How long has she been on prophylactic antibiotics?

Ursula

[Guest guest]

In a message dated 3/29/2004 7:25:09 PM Central Standard Time,

rn4premies@... writes:

> but they agreed that 2 major infections a year on prophylaxis is too much

> and you need to get more aggressive with treatment. Major infections they

> considered were, pneumonia, bronchitis and sinusitis.

:

I'm surprised they considered these " major " . Our immuno will only treat if

you get two deadly infections, what they called " deep seated " , which they said

were: meningitis, encephalitis, osteomylitis, sepsis.

's been treated for two pneumonias this year, plus her current sinus

infection which is worse after being on Ceftin for two weeks. I wonder if I

should call the immuno. Important part of that decision is that the head of the

ID/Immuno dept where we took (Dr. Krieger) is retiring and we might get a

fresh perspective. Dr. Krieger is the one who had such stringent requirements

before treatment, not being very impressed with 's history of illness,

which quite frankly has always " impressed " me. She's very practical and blunt,

you really have to get used to her. But I've always felt there MUST be more they

could do for .

Then her #s started going up and up and I figured we were on our way to

normalcy. But if she's not making pneumo antibodies, there's the change that

those

ever-increasing IgG #s are " hollow " anyway, right? So I dunno.

Once she's better we'll do the new bloodwork (I already have the referral and

script) and take it from there.

I hope gets better soon. I know IVIG is no picnic, but I've always

felt that doing SOMETHING would be better than doing nothing, you know? I guess

I just feel like we've been left to sink or swim and maybe you have, too.

After all these years of treading water, if they " offered " IVIG to us, I'd take

it gratefully. But that's just me and it is a big decision, it's not something

to take lightly, it has it's own risks, you know?

Good luck --

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

[Guest guest]

Hi Ursula, has been on Prophylaxis for years, her Dr's have tried her

off them but she just picks up infections quicker. I am hesitant with her

Immuno, I think he will resist, if he does I was hoping one of her other Dr's

will attempt it. Thanks for the support.

Re: update on

- sounds like a plan to me. Do you think your Immuno will be receptive

to starting infusions? How long has she been on prophylactic antibiotics?

Ursula

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

[Guest guest]

Hi Ursula, has been on Prophylaxis for years, her Dr's have tried her

off them but she just picks up infections quicker. I am hesitant with her

Immuno, I think he will resist, if he does I was hoping one of her other Dr's

will attempt it. Thanks for the support.

Re: update on

- sounds like a plan to me. Do you think your Immuno will be receptive

to starting infusions? How long has she been on prophylactic antibiotics?

Ursula

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

[Guest guest]

Crista,

Thats great that hes not allergic to anything! Though Im sure its

frustrating, feeling like theres no ligitimate cause for it. Kinda

like the scoli. It will all work out!! Im sure of it!! Good luck

Monday!! Ill be crossing all fingers and toes! keep us posted!!

[Guest guest]

,

Congratulations!!! received his Make A Wish last year. They are an

amazing organization.

Great to have good news.

le

[Guest guest]

-Thank goodness, sounds good!!

Buddy- GI issues and functional antibody deficiency (getting a port

and g-tube on Tuesday May 4th)

-- In , " THOMAS RUSSO " <rn4premies@m...> wrote:

> I just wanted to give an update on . Her Ped called today

and the insurance company has approved of her starting IGIV.

Finally!! We are happy to get this chance for her. The Ped has faxed

everything to the hospital so I guess we wait for them to get us

started. I don't know the procedure. She also was referred to Make A

Wish by her Ped and they also called and are starting the wish

process. So finally some good is coming of all this. She has had such

a tough, sick year that it's nice for her to have something to look

forward to. Well, thanks for listening. I hope you all are doing well.

> mom to - IgA def, asthma, gerd

>

>

[Guest guest]

In a message dated 4/30/2004 8:39:03 PM Eastern Daylight Time,

rn4premies@... writes:

I just wanted to give an update on . Her Ped called today and the

insurance company has approved of her starting IGIV. Finally!! We are happy to

get this chance for her. The Ped has faxed everything to the hospital so I guess

we wait for them to get us started. I don't know the procedure.

I'm so gald to hear about your approvel of IVIG. I don't know much about the

procedure either. I hope it goes well for . Keep us posted:)

Janet, mom to Brittany CVID

[Guest guest]

In a message dated 4/30/2004 8:59:46 PM Eastern Daylight Time,

DANIELLEPENNE@... writes:

received his Make A Wish last year.

What does the make a wish do? I don't know anything about it.

Thanks

Janet, mom to Brittany CVID