good news/bad news

[Guest guest]

Congratulations!!!! And dont worry , the terrible twos dont last

forever! lol Hang in there. Hugs

1 mom to twins Rudy (ds) & 14 & TJ 17

[Guest guest]

> I can confidently say Maggie is finally walking!

Wow! CONGRATS!!!! WAY TO GO MAGS!!

As for the stubbornness... I was the same way when I was younger (ok... I

still am!). I used to insist on EVERYTHING! Of course I knew why somethings

were a no-no... but I always concluded that I could do anything without

hurting myself! So, Mags is in good company! LOL

Sara

[Guest guest]

Congratulations on the walking :)

=====

CYNTHIA,mom to 7yrs(DS) and Dayton 2yr(DS)

__________________________________________________

[Guest guest]

In a message dated 2/18/01 8:01:47 AM Eastern Standard Time,

SStauffer1968@... writes:

<< Mother to the most stubborn 2 yr. old in the world. >>

,

gee, i cant figure out how YOU could be mother to the most stubborn 2 yr old

int eh world when I thought I had been!

I must say that our little 5 yr old dylan has been stubborn from birth- no

kidding!

i will say that he has gotten better, he still has grumpy days now and then,

but they are fewer and farther between. he is getting better about complying

- i am not sure that some of these ds children with stubborness get over it

quickly, but i do think that if you keep persevering and not giving in to

them, they will improve....not very encouraging, but i think in some cases it

might take even a few years! sorry = (

on the other hand, maybe some will turn around faster than others.

i just know that it has taken us at least 4 years to make good progress with

dylan,

he has worn me down, and worn me out many many times! i finally feel that he

is not draining me and exhausting me! he now will even say things like " ok,

mom " often! believe me, i understand the table thing...we too, have thought

Dylan to be very bright and fully understand certain situations and be non

compliant anyway!

keep up the good work, it will pay off!

Peggy

[Guest guest]

Yes , congrats on Maggie walking...I think? Tara is right behind

her! I know I may regret this I'm hoping for a better time this

spring/summer if Tara will truely be on her feet.......we could look

foward to all going to the park{without Tara eat dirt} and always

getting so dirty even if we had to let her down for a minute at someones

backyard party/bbq. We have a very busy spring/summer ahead of us filled

with christenings, communions, showers, b-d parties, bbq's,

wedding...etc. It would be great if everyone could see Tara walk and

wear a dress.............................

Gail........Bobby 7, Jillian 4 1/2, and Tara{Ds} 22 months

[Guest guest]

In a message dated 2/18/01 7:28:34 PM Eastern Standard Time, tcsykes@... writes:

Quite honestly, I refuse! Why would I want to teach her something like that

I know that deal Carolyn....they want me to "teach Maggie" to take off her shoes and socks. I can't get her to keep them on! Stores, car, home, anywhere she is she will remove both! I swear people look at her in public and then look at me and I know they are thinking, God woman, put some shoes on that poor little girl, it is 30 degrees. If they would only look closer they would see them in the cart!

[Guest guest]

In a message dated 2/18/01 7:41:39 PM Eastern Standard Time,

SStauffer1968@... writes:

<< shoes and socks. I can't get her to keep them on! Stores, car, home,

>>

Yup, Dylan too...all the time!

peggy

[Guest guest]

Congrats on Maggie walking! What a wonderful (and demanding) milestone to have achieved! Emma used to resort to crawling when she was in a hurry too! Now she runs like the wind, blonde hair flowing behind and her little bottom wiggling from side to side. I can only describe the back view as I can never overtake her to see what she looks like from the front - she is always running away from me!

I can really relate to her climbing on the table. Emma and Nicki STILL climb on the dining room table and it drives me nuts! I don't know whether it is to get my attention or just to get a better view of the TV/VCR unit that we keep on the table. They both climb on my coffee table and lets face it....if it's climbable, they'll climb it probably because it is there!

Yesterday I went out to the back yard to get some quiet time and as I looked back at the house, I could see Emma in her bedroom window (she was supposed to be having a nap) clinging precariously on the grill covering her window. She looked like Spider Girl! One of the gross motor things I am supposed to be working on with Emma is to show her how to get an object to climb on e.g. a step, so she would be able to reach something that is placed high out of reach! Quite honestly, I refuse! Why would I want to teach her something like that???

CarolynMum to on, , Emma (Ds) 4 and Nicki (Ds) 3http://www.geocities.com/nz_mom/sykesfamily.html

[Guest guest]

PeggyLago@... wrote:

>

> In a message dated 2/18/01 7:41:39 PM Eastern Standard Time,

> SStauffer1968@... writes:

>

> << shoes and socks. I can't get her to keep them on! Stores, car, home,

> >>

> Yup, Dylan too...all the time!

> peggy

>

Yep, you can Tara to that list too!

I bought Tara and cute slippers once.....waste of money on Tara,

she won't keep them on, it's either shoes tied on snug or bare feet.

Gail

>

> http://DSyndrome.com/Multiples

[Guest guest]

Great news !! Way to go Maggie!! Landon is

walking but not any great lengths. The fartherest he

will go is across the room. If I ask him to walk to

me, he will get so tickled that he loses balance. As

for climbing, Landon and Maggie are tied!! The child

is part monkey. He climbs EVERYTHING in sight. It

makes me a nervous wreck because I just know he is

going to harm himself. BTW, have yall already moved.

This makes the third time this year, right? I don't

know how you do it. Moving 4 houses down has about

killed me. We are still not unpacked. Cross country

and then again would definitely do it for me. Congrats

and enjoy your new house. mom to Landon (Ds)

and Ashton 32 months SStauffer1968@... wrote:

> I can confidently say Maggie is finally walking!

> She turned 2 in November

> and has just now decided walking is okay. She still

> crawls when in a hurry

> but is choosing walking more and more often. Along

> with being upright she

> has decided to start throwing things but more

> maddening is her complete

> devotion to sitting on the kitchen table. SHE WON'T

> STOP. She is crying

> hysterically right now because I have again removed

> her. She doesn't pay any

> attention to my sharp no's, or the constant

> removal....nothing. She knows we

> don't want her up there. She is driving me up the

> wall. I feel like I

> should just let her fall off once but God, she could

> hurt her head or break

> an arm or something. She is smart and should

> understand not to get on the

> table. Right now she just figured out how to put

> the thing in my cell phone

> to charge it (they are on the kitchen table). So, I

> would assume she could

> figure out not to get on the table.

>

>

> Mother to the most stubborn 2 yr. old in the world.

>

__________________________________________________

[Guest guest]

, Forgot to address the shoe and sock issue or

shall I say dilemna.. We have that problem too!!

Landon sheds shoes and socks all of the time,

especially when I am late for an appointment. I'll

look in the back of the van and there he will sit

barefooted and a great big grin on his face!! At least

I have an excuse for being late..lol mom to

Landon (Ds) and Ashton 32 months ---

PeggyLago@... wrote:

> In a message dated 2/18/01 7:41:39 PM Eastern

> Standard Time,

> SStauffer1968@... writes:

>

> << shoes and socks. I can't get her to keep them

> on! Stores, car, home,

> >>

> Yup, Dylan too...all the time!

> peggy

>

__________________________________________________

[Guest guest]

,

I'm sorry that has officially been diagnosed with CVID. I know that

you've suspected it, but hearing it must be hard!

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

[Guest guest]

nogirlsallboys wrote:

> Cole had his second immuno appt last Tuesday and we got a mixed bag

> report. On the bright side, his IgG levels have resolved on their

> own and his response to the Prevnar has finally kicked in!

That is good news/bad news! It's frustrating to get the IgA deficiency

diagnosis because all you can do is treat the symptoms or try to prevent

the problems with antibiotics.

However, I do want to ask one question. When you say his IgG was normal

-- are you talking about total IgG or each particular subclass?

Many IgA deficient patients are low on one or more subclass even though

their total IgG looks fine. Just want to make sure. If there's a

subclass that's low -- IVIG should help. If not....?????

And remember, if he's improving in his IgG, maybe the IgA will follow

suit. Don't lose hope!

In His service,

dale

[Guest guest]

In a message dated 4/17/2006 4:01:18 PM Central Standard Time,

mrlbrinks@... writes:

> Unfortunately I feel like we are back to square one again though.

> Don't get me wrong, I am elated that his body is starting to do

> something on its own. However, the clinical picture is still poor.

> The immuno had agreed to try IVIG to help improve it if the IgG

> levels were still low. Now that they are normal we are stuck with

> treating the symptoms, not giving him a " cure " .

Rogena:

Boy, I know exactly how you feel. Very similar thing happened with .

They wanted to do IVIG, I wanted to wait, rechecked and IgG was up so they

yanked

the idea of IVIG. Clinical picture never changed and never changed, until now

at age 7 (jinx jinx! knock wood!) she seems to be doing better???

From age two to age seven I went back and forth between thinking we're

holding on, it's okay, to kicking myself for not taking the IVIG when I " had the

chance " .

When any numbers increase, people expect you to jump for joy and not be

disappointed, they wonder what is going on in your head if you aren't thrilled

at

the result. But the Clinical Picture is what moms care about -- how is my baby

feeling? If he or she is still sick, who cares what the #s say????? At least

you know WE understand.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Rogena,

I can relate to how you're feeling. We still don't have a game plan for our

other three kids (Conner has been on IVIG for awhile now). We have

discussed IVIG for them, but have no immediate plans. The kids continue to

struggle with one illness after the other.

Sounds like you are doing the right thing by continuing to look for answers!

Take care,

Mom to Conner (11, possible combined immune deficiency, Asperger's, mild CP,

partial seizures, asthma, GERD, Hashimoto's disease and resolved adrenal

insufficiency),

Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, unknown PID, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown PID, asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

Dale: I thought that I understood that the IgG Subclasses all looked

good. I noticed that some of you have your kid's actual numbers on

hand. Is this something that I can request from Cole's immuno? I

have never seen the actual numbers on his chart. I guess I was afraid

to ask...wasn't sure if that was something I can get. Thanks!

-Rogena (Mom to 4 boys, including Cole -Partial IgA Def, GERD,

possible Celiac)

" However, I do want to ask one question. When you say his IgG was

normal

> -- are you talking about total IgG or each particular subclass?

>

> Many IgA deficient patients are low on one or more subclass even

though

> their total IgG looks fine. Just want to make sure. If there's a

> subclass that's low -- IVIG should help. If not....?????

>

> And remember, if he's improving in his IgG, maybe the IgA will

follow

> suit. Don't lose hope!

>

> In His service,

> dale

>

[Guest guest]

nogirlsallboys wrote:

> Dale: I thought that I understood that the IgG Subclasses all looked

> good. I noticed that some of you have your kid's actual numbers on

> hand. Is this something that I can request from Cole's immuno?

You bet you can. You have a right to a copy of any lab work that is

done! You paid for it. We are so fortunate to be at this place -- this

wasn't a patient's right until just a few years ago -- but yes, you have

a right to those results. Just call the nurse and say, " Oh, I'd like a

copy of the Cole's lab work for my records. " You may have to go in and

sign a medical release -- but they have to supply you with a copy.

In His service,

dale

[Guest guest]

Meant Procrit.........not sure where I came up with " Prescript! "

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of Dorothy

Sent: Thursday, October 11, 2007 5:36 PM

Hepatitis C

Subject: [sPAM] Good News/Bad News

The nurse practitioner just called and my 4 week blood work shows the HCV is

undetectable. She said that's great at this early stage.

The bad news is my hemoglobin is 9.2 and she's going to order Prescript to

be delivered to me ASAP. I didn't realize that this is something I would be

injecting, but she explained that I'll do it weekly.

The other issue is that I have had some soreness in my upper arm and now

some pain in my left shoulder. I feels like I might have slept on it wrong

or pulled something. It hurts more when I take a deep breath. I told her

that and she was quite concerned. I happen to have 2 appointments tomorrow

- my rheumatologist in the morning and the internist in the afternoon so

she's going to fax the report over to the internist. She told me if it gets

worse, I should go to the ER.

While I'm excited about the good news, I'm concerned about the bad news :-(

[Guest guest]

Meant Procrit.........not sure where I came up with " Prescript! "

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of Dorothy

Sent: Thursday, October 11, 2007 5:36 PM

Hepatitis C

Subject: [sPAM] Good News/Bad News

The nurse practitioner just called and my 4 week blood work shows the HCV is

undetectable. She said that's great at this early stage.

The bad news is my hemoglobin is 9.2 and she's going to order Prescript to

be delivered to me ASAP. I didn't realize that this is something I would be

injecting, but she explained that I'll do it weekly.

The other issue is that I have had some soreness in my upper arm and now

some pain in my left shoulder. I feels like I might have slept on it wrong

or pulled something. It hurts more when I take a deep breath. I told her

that and she was quite concerned. I happen to have 2 appointments tomorrow

- my rheumatologist in the morning and the internist in the afternoon so

she's going to fax the report over to the internist. She told me if it gets

worse, I should go to the ER.

While I'm excited about the good news, I'm concerned about the bad news :-(

[Guest guest]

Meant Procrit.........not sure where I came up with " Prescript! "

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of Dorothy

Sent: Thursday, October 11, 2007 5:36 PM

Hepatitis C

Subject: [sPAM] Good News/Bad News

The nurse practitioner just called and my 4 week blood work shows the HCV is

undetectable. She said that's great at this early stage.

The bad news is my hemoglobin is 9.2 and she's going to order Prescript to

be delivered to me ASAP. I didn't realize that this is something I would be

injecting, but she explained that I'll do it weekly.

The other issue is that I have had some soreness in my upper arm and now

some pain in my left shoulder. I feels like I might have slept on it wrong

or pulled something. It hurts more when I take a deep breath. I told her

that and she was quite concerned. I happen to have 2 appointments tomorrow

- my rheumatologist in the morning and the internist in the afternoon so

she's going to fax the report over to the internist. She told me if it gets

worse, I should go to the ER.

While I'm excited about the good news, I'm concerned about the bad news :-(

[Guest guest]

Meant Procrit.........not sure where I came up with " Prescript! "

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of Dorothy

Sent: Thursday, October 11, 2007 5:36 PM

Hepatitis C

Subject: [sPAM] Good News/Bad News

The nurse practitioner just called and my 4 week blood work shows the HCV is

undetectable. She said that's great at this early stage.

The bad news is my hemoglobin is 9.2 and she's going to order Prescript to

be delivered to me ASAP. I didn't realize that this is something I would be

injecting, but she explained that I'll do it weekly.

The other issue is that I have had some soreness in my upper arm and now

some pain in my left shoulder. I feels like I might have slept on it wrong

or pulled something. It hurts more when I take a deep breath. I told her

that and she was quite concerned. I happen to have 2 appointments tomorrow

- my rheumatologist in the morning and the internist in the afternoon so

she's going to fax the report over to the internist. She told me if it gets

worse, I should go to the ER.

While I'm excited about the good news, I'm concerned about the bad news :-(

[Guest guest]

Wow, after only 4 weeks?! So glad to hear it Dorothy!

As for the pain in your arm and shoulder... yeah, I'd be concerned

and you need to be alert to any sensations like that regardless of

whether it's treatment related or not.

Listen to your body and if it tells you to go in, GO for goodness'

sake.

I had chest pain as well after 3 weeks but it turned out to be this

damned lung infection which has spread to my sinuses of course.

That's why I haven't been posting lately by the way. I feel like crap

from that and the fever that goes with it all.

I just bought a whole house humidifier last night that should be here

in a few days and if that doesn't help I'll talk to Dr about helping

me out with this problem.

Didn't know it was possible to be all dried up and still spewing

nasties all over. lmao

Sometimes I just gotta laugh. lol

Catch ya later and I hope you're ok.

Gayle

>

> The nurse practitioner just called and my 4 week blood work shows

the HCV is

> undetectable. She said that's great at this early stage.

>

>

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

>

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me

if it gets

> worse, I should go to the ER.

>

>

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

>

>

>

[Guest guest]

Wow, after only 4 weeks?! So glad to hear it Dorothy!

As for the pain in your arm and shoulder... yeah, I'd be concerned

and you need to be alert to any sensations like that regardless of

whether it's treatment related or not.

Listen to your body and if it tells you to go in, GO for goodness'

sake.

I had chest pain as well after 3 weeks but it turned out to be this

damned lung infection which has spread to my sinuses of course.

That's why I haven't been posting lately by the way. I feel like crap

from that and the fever that goes with it all.

I just bought a whole house humidifier last night that should be here

in a few days and if that doesn't help I'll talk to Dr about helping

me out with this problem.

Didn't know it was possible to be all dried up and still spewing

nasties all over. lmao

Sometimes I just gotta laugh. lol

Catch ya later and I hope you're ok.

Gayle

>

> The nurse practitioner just called and my 4 week blood work shows

the HCV is

> undetectable. She said that's great at this early stage.

>

>

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

>

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me

if it gets

> worse, I should go to the ER.

>

>

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

>

>

>

[Guest guest]

Wow, after only 4 weeks?! So glad to hear it Dorothy!

As for the pain in your arm and shoulder... yeah, I'd be concerned

and you need to be alert to any sensations like that regardless of

whether it's treatment related or not.

Listen to your body and if it tells you to go in, GO for goodness'

sake.

I had chest pain as well after 3 weeks but it turned out to be this

damned lung infection which has spread to my sinuses of course.

That's why I haven't been posting lately by the way. I feel like crap

from that and the fever that goes with it all.

I just bought a whole house humidifier last night that should be here

in a few days and if that doesn't help I'll talk to Dr about helping

me out with this problem.

Didn't know it was possible to be all dried up and still spewing

nasties all over. lmao

Sometimes I just gotta laugh. lol

Catch ya later and I hope you're ok.

Gayle

>

> The nurse practitioner just called and my 4 week blood work shows

the HCV is

> undetectable. She said that's great at this early stage.

>

>

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

>

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me

if it gets

> worse, I should go to the ER.

>

>

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

>

>

>

[Guest guest]

Wow, after only 4 weeks?! So glad to hear it Dorothy!

As for the pain in your arm and shoulder... yeah, I'd be concerned

and you need to be alert to any sensations like that regardless of

whether it's treatment related or not.

Listen to your body and if it tells you to go in, GO for goodness'

sake.

I had chest pain as well after 3 weeks but it turned out to be this

damned lung infection which has spread to my sinuses of course.

That's why I haven't been posting lately by the way. I feel like crap

from that and the fever that goes with it all.

I just bought a whole house humidifier last night that should be here

in a few days and if that doesn't help I'll talk to Dr about helping

me out with this problem.

Didn't know it was possible to be all dried up and still spewing

nasties all over. lmao

Sometimes I just gotta laugh. lol

Catch ya later and I hope you're ok.

Gayle

>

> The nurse practitioner just called and my 4 week blood work shows

the HCV is

> undetectable. She said that's great at this early stage.

>

>

>

> The bad news is my hemoglobin is 9.2 and she's going to order

Prescript to

> be delivered to me ASAP. I didn't realize that this is something I

would be

> injecting, but she explained that I'll do it weekly.

>

>

>

> The other issue is that I have had some soreness in my upper arm

and now

> some pain in my left shoulder. I feels like I might have slept on

it wrong

> or pulled something. It hurts more when I take a deep breath. I

told her

> that and she was quite concerned. I happen to have 2 appointments

tomorrow

> - my rheumatologist in the morning and the internist in the

afternoon so

> she's going to fax the report over to the internist. She told me

if it gets

> worse, I should go to the ER.

>

>

>

> While I'm excited about the good news, I'm concerned about the bad

news :-(

>

>

>

>