Re: Thanksgiving? What's that?

[Guest guest]

The other really

wierd thing that has happened to maggie is that she got up yesterday

morning and her upper lip is swollen and completely chapped....I

mean really chapped.....mean really chap

Is this the little one that when you scratch her back it stays for 24 hours?

Does she get hives at all?

Janet mom to Brittany age 15, CVID and auto-immune's ?? yet to be determined

[Guest guest]

well my child chooses christmas- i wonder if it is from the live tree? it would

make since since it is around that time every year.

---- cerdaclan <tcerda@...> wrote:

> Well, here we go again. Every year since the birth of my first

> child....we have spent thanksgiving in the hospital. For the first

> 3 years of her life, Molly had pneumonia every thanksgiving.....like

> clockwork (but then again, she had pneumonia 8 times a year so she

> was always either getting it or just getting over it with maybe 3

> days in between). We thought we were off the hook last year when we

> headed into thanksgiving with well children.....that was until

> Maggie swallowed a screw on thanksgiving day......we later learned

> it was the screw the held the needle into my sewing machine.....the

> one that I was using to make the girls Christmas dresses (I had no

> intention of retrieving it and ended up epoxying needles into my

> machine ((whichk kept breaking)) in order to finish the dresses).

>

> So here we are again this year....we thought we were going to

> Colorado to be with family....but that sort of went a bit funky. So

> we were going to spend it with some close friends here or we were

> thinking of going camping at Zion and taking the Turkey fryer with

> us.

>

> So Maggie has had these big nodes....her neck and groin. She has

> been very tired and has had bouts of diarrhea these last few days.

> Her recent bloodwork came back showing that she is still

> neutropenic...has a low lymphocyte count (3.8). Both of those are

> not unusual....she has always been neutropenic on her blood work and

> had low lymphocytes. So I e-mailed Dr. all the info. He

> wants several other blood tests ordered and a full body CAT scan,

> saying that he is worried that she has some sort of systemic

> infection. I am a bit concerned because our sun conure is very sick

> right now....trying really hard to die of something. Many of the

> bacterial diseases that birds have are transmissible to

> humans....especially immune deficient humans. The other really

> wierd thing that has happened to maggie is that she got up yesterday

> morning and her upper lip is swollen and completely chapped....I

> mean really chapped.....the entire lip. We all kiss the bird

> frequently....something that I now know from the vet we should not

> be doing. Additionally, we are having a HORRIBLE fly problem that

> is really freaking me out....Molly picked up one of her toys the

> other day our of the toy box and there were tiny maggots all over

> it. The house is very clean....I am using antibacterial sprays

> everywhere since the fly issue started....it is just that the temps

> here in Vegas are still so warm for this time of the year that the

> fly's are mass producing everywhere. There is not a fly swatter to

> be found in this town. I woke up in the morning a few days ago to

> well over 100 flys stuck to my living room ceiling. YUUUUUKKKKKKK>

> My last copy of IG Living has turned into a fly swatter. Flys are

> so darn dirty. All this stuff just stacks up against these kids

> and it drives me nuts!

>

> So now.....we are off to UCLA children's hospital on Tuesday and

> will likely have to stay for a few days for all the tests and test

> results. Does anyone know if any of the hospital associated

> programs that have a thanksgiving dinner for families that are stuck

> there over the holidays?

>

> Terri (mom and both daughter PIDers)

>

>

[Guest guest]

no, it's the other one.

>

>

>

>

>

> The other really

> wierd thing that has happened to maggie is that she got up

yesterday

> morning and her upper lip is swollen and completely chapped....I

> mean really chapped.....mean really chap

>

> Is this the little one that when you scratch her back it stays for

24 hours?

> Does she get hives at all?

>

>

>

> Janet mom to Brittany age 15, CVID and auto-immune's ?? yet to

be determined

>

>

>

[Guest guest]

Does anyone know if any of the hospital associated

> programs that have a thanksgiving dinner for families that are stuck

> there over the holidays?

I'm new here and haven't even introduced myself, but the Mc House

will do something nice for Thanksgiving if you are staying there.

-

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

Everyone is raving about the all-new beta.

[Guest guest]

We've been in patient at UCLA on minor holidays - and they always do stuff.

Even at Halloween on the clinic - we were there last year and there was a

big huge Trick or Treat thing. I'm sure UCLA will have something. Call the

Child Life Department, they can tell you.

I would however, question the timing - we've found holidays and holiday

weekends, the place becomes a ghost town - and everything gets delayed - is

this something that can happen now? I hate to say it - but NOTHING got

scheduled over Memorial Day weekend - we were there and things moved like

molasses.

Good luck.

Dayna

_____

From: [mailto: ] On Behalf Of

Rob or Sunseri

Sent: Tuesday, November 14, 2006 1:36 PM

Subject: Re: Thanksgiving? What's that?

Does anyone know if any of the hospital associated

> programs that have a thanksgiving dinner for families that are stuck

> there over the holidays?

I'm new here and haven't even introduced myself, but the Mc

House will do something nice for Thanksgiving if you are staying there.

-

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

Everyone is raving about the all-new beta.

[Guest guest]

I am so sorry to hear that you will be spending, yet another, thanksgiving in

the hospital again. I am also sorry but I can't help much in that area though.

Cassie

cerdaclan <tcerda@...> wrote:

Well, here we go again. Every year since the birth of my first

child....we have spent thanksgiving in the hospital. For the first

3 years of her life, Molly had pneumonia every thanksgiving.....like

clockwork (but then again, she had pneumonia 8 times a year so she

was always either getting it or just getting over it with maybe 3

days in between). We thought we were off the hook last year when we

headed into thanksgiving with well children.....that was until

Maggie swallowed a screw on thanksgiving day......we later learned

it was the screw the held the needle into my sewing machine.....the

one that I was using to make the girls Christmas dresses (I had no

intention of retrieving it and ended up epoxying needles into my

machine ((whichk kept breaking)) in order to finish the dresses).

So here we are again this year....we thought we were going to

Colorado to be with family....but that sort of went a bit funky. So

we were going to spend it with some close friends here or we were

thinking of going camping at Zion and taking the Turkey fryer with

us.

So Maggie has had these big nodes....her neck and groin. She has

been very tired and has had bouts of diarrhea these last few days.

Her recent bloodwork came back showing that she is still

neutropenic...has a low lymphocyte count (3.8). Both of those are

not unusual....she has always been neutropenic on her blood work and

had low lymphocytes. So I e-mailed Dr. all the info. He

wants several other blood tests ordered and a full body CAT scan,

saying that he is worried that she has some sort of systemic

infection. I am a bit concerned because our sun conure is very sick

right now....trying really hard to die of something. Many of the

bacterial diseases that birds have are transmissible to

humans....especially immune deficient humans. The other really

wierd thing that has happened to maggie is that she got up yesterday

morning and her upper lip is swollen and completely chapped....I

mean really chapped.....the entire lip. We all kiss the bird

frequently....something that I now know from the vet we should not

be doing. Additionally, we are having a HORRIBLE fly problem that

is really freaking me out....Molly picked up one of her toys the

other day our of the toy box and there were tiny maggots all over

it. The house is very clean....I am using antibacterial sprays

everywhere since the fly issue started....it is just that the temps

here in Vegas are still so warm for this time of the year that the

fly's are mass producing everywhere. There is not a fly swatter to

be found in this town. I woke up in the morning a few days ago to

well over 100 flys stuck to my living room ceiling. YUUUUUKKKKKKK>

My last copy of IG Living has turned into a fly swatter. Flys are

so darn dirty. All this stuff just stacks up against these kids

and it drives me nuts!

So now.....we are off to UCLA children's hospital on Tuesday and

will likely have to stay for a few days for all the tests and test

results. Does anyone know if any of the hospital associated

programs that have a thanksgiving dinner for families that are stuck

there over the holidays?

Terri (mom and both daughter PIDers)

www.marykay.com/cassieredinger

[Guest guest]

>Well, here we go again. Every year since the birth of my first

>child....we have spent thanksgiving in the hospital. For the first

>3 years of her life, Molly had pneumonia every thanksgiving.....like

>clockwork

I'm sorry, but your email did make me laugh ! In our house its Halloween

and Valentine's Day. We have been in the hospital for both holidays for the

past 4 years (and is going to be 5 in January...). We'll see if the

record holds. How romantic is it to have your husband visit you in

isolation on Valentine's Day ? This is why our " good " friends and family

know that we can only ever pencil-in our plans. If we plan a bday party or

a camping trip something always comes up with that we have to cancel

or postpone (pneumonia, broken arm, cryptosporidium....)

I found your note funny because I thought we were the only ones this happens

to ! Hope you find somewhere to celebrate Thanksgiving... or you could

always order chicken nuggets on it the hospital menu and start a new

tradition !

[Guest guest]

We did Christmas for 3 years in a row between Macey being 4 to 6 years old. I

was amazed at how festive they would get to keep the kids spirits up.

Ursula

[Guest guest]

Ours is Valentine's Day and Easter, not hospital though. We've spent 4th of

July and Thxgving in the hospital, but only once each. 's thing is

pneumonia on Valentine's Day and gastro virus on Easter, both of them pretty

much every year! So we feel some of your pain (better to be home and not that

sick rather than in the hospital though, I'd say).

(mom to 7, antibody def )

RE: Thanksgiving? What's that?

>Well, here we go again. Every year since the birth of my first

>child....we have spent thanksgiving in the hospital. For the first

>3 years of her life, Molly had pneumonia every thanksgiving.....like

>clockwork

I'm sorry, but your email did make me laugh ! In our house its Halloween

and Valentine's Day. We have been in the hospital for both holidays for the

past 4 years (and is going to be 5 in January...).

________________________________________________________________________

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[Guest guest]

We have spent easter, their 1st birthday ,my birthday

all in the hospital with ...she was already in

the hospital last week so hopefully we won't be there

for Thanksgiving.LOL. We call it our home away from

home...we seem to be there sooooo much.

Candise Ott

mom to (LCHAD,GERDS,delayed gastric emptying,

speak and walking delay,unnamed blood

problem,allergies,unknown immune issues)19 months

(carrier,developmentally delayed)

Kadian(carrier)normal 3 year old

Nofolk,VA

--- bunneegirl@... wrote:

> Ours is Valentine's Day and Easter, not hospital

> though. We've spent 4th of July and Thxgving in the

> hospital, but only once each. 's thing is

> pneumonia on Valentine's Day and gastro virus on

> Easter, both of them pretty much every year! So we

> feel some of your pain (better to be home and not

> that sick rather than in the hospital though, I'd

> say).

>

> (mom to 7, antibody def )

>

> RE: Thanksgiving? What's that?

>

>

>

>

> >Well, here we go again. Every year since the birth

> of my first

> >child....we have spent thanksgiving in the

> hospital. For the first

> >3 years of her life, Molly had pneumonia every

> thanksgiving.....like

> >clockwork

>

> I'm sorry, but your email did make me laugh ! In

> our house its Halloween

> and Valentine's Day. We have been in the hospital

> for both holidays for the

> past 4 years (and is going to be 5 in

> January...).

>

________________________________________________________________________

> Check out the new AOL. Most comprehensive set of

> free safety and security tools, free access to

> millions of high-quality videos from across the web,

> free AOL Mail and more.

>

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

*hugs* I know how you feel, last year was the first year we were not at the

hospital for the holidays or sick and I was thrilled. Usually one of us has

bronchitis by Thanksgiving and Pneumonia by Xmas. The baby is sick again

with some upper resp thing and I'm hoping it goes away and doesn't land us

in the hospital as inpatient but were spending the next 2 weeks at

Mc house for I think 9 appts between both kids over 7 days and I'm

terrified were going to get RSV or something just as bad!

6 combined immune def + selective antibody def

Lilly 5.5mo and getting immune work up next month since she's following in

big sis's foot steps