Judy

[Guest guest]

, I just discovered that I cannot delete just one message at a time

on digest, so I lost the first one, oh well! This one I got all 25 messages,

but it's great so far. The only problem is remembering everything since I

don't think I can reply to messages individually, can I?

I gather from the email that you have not been being a good girl...probably

doing more than you are supposed to, will any of us ever learn? I know I

haven't, but I do live in hope.

Dawn, what the heck is wrong with you? I think you need a doctor like my

dream MD, he would start at my toes and work UP. He could fix nonworking

parts, sagging parts, remove scars and all bruising (from the PLavix), and

suck out all the fat! And when he gets to the top of my head, he can cut off

all the excess skin, which would give me a face lift! How does that sound??

Stand in line, I'm first because it was my idea! But I'll let you cut into

the line behnd me.

You know the nicest part about being on digest, was that I just prayed for

the whole group, with emphasis on individuals who I knew needed extra

prayers. Now, everyone needs extra prayers!!! You guys are wearing my knees

out, and you know I am not supposed to kneel! (Right, as if I could (a) get

down on the floor, and ( have a chance in hell that I could get up again!).

But symbolically I am kneeling!

Thought I'd share a little good news, my dose of MTX has been decreased,

yes, I said DECREASED from 20 mgs to 15mgs. If at my next appt, I still am

doing OK, he's going to knock it down again! It would be so wonderful to

even think about getting off the MTX. I am (knock on wood) not on any Pred

at the moment. Plus, I just got back from my Opthomologist and he said I am

stable - which is the best I can hope for and will gladly accept! He thinks

the pain and popping in my jaw may be TMJ, does anyone know how they treat

that? If they have to wire my jaw shut, I COULD LOSE WEIGHT!!!!!! The

weight loss would be good, but I'm not to keen on getting my jaw wired shut.

Can you imagine ME not talking??? Right, they HAVE to find another way!

Well, everyone, PLEASE take care of yourselves, and try to:

a) avoid hurricanes

stay dry

c) GET HEALTHY!

Love, Judy

>>

[Guest guest]

Hi Judy,

I did try some astringent but that surely burns. I will just use

warm water and a wash cloth for now. Yes, my face is so sensitive

right now also and still hurts to touch. What the heck am I going to

do tomorrow morning upon my return to work? I can't walk in there

with a swollen lip and no makeup..(haha)

Don't ask what's next because I noticed late last night this huge

bump under the upper lip area kind of closer to the gum area. Does

that sound right? What the heck did my OS do to my lip? No wonder

it is still so swollen. I did notice the area is a little red but

not bad.

Geez, the stuff we keep finding post op..(haha)

--Caboose

> ,

> You're welcome. As far as what's next? Lord, I hope nothing for

either

> of us!

> If you think it is the same type of little pimply rash that I had,

try

> putting some astringent on it, or an anti-acne cream or lotion. I

used

> the Neutrogena clear-pore stuff, and for me that worked great. I

think

> any type of astringent would work though, maybe even those

Clearasil

> pads would work.

> I don't think you'll end up with a pimple face! My rash stayed

right

> around the nose, and just a little into the cheek area. I started

> using the astringent right away, and it didn't get too out of hand.

> Just in case it is 'true' pimples though, don't squeeze or pick

even

> if it's tempting to do so. I didn't and that helped keep it from

> spreading further I think. Of course, my face is still sensitive

from

> the surgery - so even if I'd wanted to pick at it, that wasn't even

an

> option - LOL.

> I'm sure you don't look like a swollen red nosed reindeer either.

I've

> known a couple people with cea (not sure if I spelled that

right),

> and that really can give a person a redish nose. If your nose is

red

> now but wasn't before surgery, I'd chalk it up to another skin

> reaction from the surgery - it will probably clear up soon.

> Judy (still in limbo - but hopefully not for much longer)

[Guest guest]

> Hi Judy,

That's great news about your son! I have a too, who is

almost 12. He is 59 lbs. and 52.5 " , and also has OCD. He still has

his g-tube, and doesn't like to eat. You mentioned that Matty is in

a special school and a non-reader. This interested me, because I am

a reading specialist in a center school (all exceptional education

students). Has he ever been tested for learning disabilities or had

IQ testing? What kind of school does Matty go to? What research-

based reading programs has he tried? There are many reasons why a

child might not be able to read, but the good news is that only 5% of

our population can not learn to read (mostly related to IQ). Feel

free to email me privately if you'd rather respons that way at

capuano_k@...

Kim C.

> Hi all,

>

> I am usually a lurker but this sounds interesting. My son

> will be

> 10 in a couple of weeks and weighs in at about 62 pounds and 50

> inches. He

> had his g-tube removed permanently in March after 8 years. Yeah!!

> I have

> to say after being a horrible eater for years, he has found food in

> a big

> way. He eats and eats and eats. Still picky but what he eats, he

> eats a

> lot of. Actually, I am getting concerned that he will get chubby

> (we have a

> very high genetic propensity for obesity here). He is doing very

> well on

> growth hormone (2 years). Thank God no serious ketone episodes in

> 2 years.

>

> I was 32 when I had Matty. Premature labor since 28 weeks and

> delivered at

> 37 weeks. Emergency c-section.

>

> I took Clomid years earlier and got pregnant on my own in spite of

> it. My

> first little boy was stillborn at 22 weeks.

>

> Matty loves bologna, yogurt, cheese, fruit, corn, cheese doodles

> and bread,

> bread, bread with lots of garlic. He is finally branching out to

> chicken

> and will occasionally try new things. Yeah!

>

> I craved tunafish sandwiches which is so unusual because I only eat

> tunafish

> a couple of times a year normally. I also loved blt sandwiches and

> ate

> quite a bit with him but did not gain more than 10 pounds.

>

> Our issues with Matty now are his cognitive difficulties. He is in a

> special school and at almost 10 is basically a non-reader. His verbal

> skills and vocabulary are quite impressive but the poor thing just

> can't

> read. He is definitely stronger with math skills. Not sure what

> the future

> will hold for him but we take it one day at a time.

>

> Wondering if anyone else's child suffers from OCD and if they are on

> medication? Matty is quite obsessive about things and he seems to

> worry so

> much. I hate to see him suffer.

>

> Thanks for listening.

>

> Judy (mom to Matty, Cody and Zack)

>

[Guest guest]

Judy,

has had his back brace for 1.5 years now. When he first

started wearing it, he was supposed to wear it 21 hours a day, which

meant taking it off basically to shower & have a short break. When

he slept (laying down position), the brace would move slightly, and

it was difficult with his g-tube. I questioned the doctor about

this, and he told me it would be ok for to just wear the

brace in the daytime hours (supposedly for 16 hours per day), but

actually wears it at most 12 or 13 hours per day.

was great about wearing his brace at first, but recently, I have had

a lot of problems trying to get him to wear it. I don't blame him.

It is hot and covers a good portion of his torso, as he also has a

chest plate that extends up just under his neck. He also has

difficulty going to the bathroom in it, because it extends so low.

In the past month, has been more on track with his compliance

in wearing the brace, as his kyphosis and scoliosis both progressed

quite a bit according to the Xrays at our last appointment in December.

Kim

On Jan 30, 2006, at 9:38 PM, RSS-Support wrote:

>

> Hi Kim

> I did reply to your message but I think I must have clicked on the

> wrong thing as it hasn't come up on the message board. I think I

> clicked on your yahoo name. Very sorry, I was very grateful for your

> message and I have spoken to Dr Stanhope today who has been my son's

> consultant since he was 2!He is happy with Jack's growth as he has

> done very well on growth hormone and doesn't believe in treating him

> with delaying drugs at present although Jack shows definite signs of

> andrenarche. He has told me to stop the GHR injections at present

> because of the scoliosis and this should be looked at by a spinal

> specialist this Friday.

> How does your son get on wearing the back brace,does he have to wear

> it all the time even to bed etc and how long has he been wearing it

> for? I'm quite anxious as I haven't a clue at the moment what line of

> treatment will follow.

> Many Thanks Again

> Judy