Val

[Guest guest]

Hi Becki!

I have 2 or 3 of your recent posts saved to respond to - along with a few from

some other folks. Maybe I can respond to all of yours with this reply.

I remember the early days so well, I was so sure we were on our way to the R

word. I remember feeling bad because Robbie was having an easier time of it

than , wishing would begin to feel better too. I couldn't be happier

for , I am so excited about how well he is doing - it brings tears of joy

to my eyes - who knows - maybe by the time we get to Providence, our boys will

be closer to looking each other eye to eye and both feeling ready to take on

Rhode Island! That picture breaks my heart too - the Rad Dudes - I kept

thinking while I was out there, that maybe he wasn't looking as bad as I thought

he was - but the picture shows it so clearly - though he wouldn't have missed it

for anything!

You said such sweet things about Robbie - sometimes I wonder if I will be able

to keep him so focused and motivated - how will we weather the teen years? But,

I think so much of who Robbie is, is already so ingrained in him that no matter

what path he chooses, he will be great at it. Greatness? who knows,

President, hmmm - that would be cool, but if I am going to be " first Mom " then I

will have to go on a diet! I read a quote recently that was something like:

" You don't raise heroes; you raise sons. And if you treat them like sons,

they'll turn out to be heroes, even if it's just in your eyes. " Robbie is my

hero. Being his Mom has filled me with more joy, more love, more inspiration

than anything in my life, and has made me a better person. is having a

rough time right now, but you will find the way to help him with his problems

with school - and the behaviour issues you are concerned about. You and Allan

are incredibly devoted parents - you will find the way to help step into

his own path - and then lookout. Talk about supersonic!

Thanks for you message regardig Robbie's recent GI issues - he is doing well

right now, it's just another wait and see kind of thing. I got a little

frustrated with his pedi the other day - he said " it's probably a polyp - that's

no big deal - they scope, and clip it and it's over " Easy for him to say - it's

not his six year old. How many six year olds get polyps? And how much more

does he think that it's no big deal for Robbie to have to deal with? Now Robbie

is concerned, because they only get two bathroom breaks during clssstime a day.

They have to " sign-up " somewhere, when they go to the bathroom, I guess to keep

track of how many trips. Robbie's teacher has already told him that the school

nurse talked to her, and that he can go to the bathroom whenever he needs to,

not to worry about the two times. So, i looked at him and told him i didn't

understand what the problem is. he said that if he signs up every time he goes

to the bathroom, that all of the other kids will say he is going to the bathroom

more than two times. (oh, second grade) So, I am going to write his teacher,

and ask he if he can limit his " sign-ups " to 2. Or something. I had a long

talk with him, and asked him why he thought they had to sign up at all - and he

didn't know - so I told him it was so the kids wouldn't keep going to the

bathroom to get out of work, and goof off, play with the water running (the

hallway doesn't come into play - they have a bathroom in a little area between

their classroom and the one nextdoor.) He looked at me and said " Why would they

do that? " - oh, the innocence of youth. - great, I'm thinking to myself, I've

put ideas in his head. But we had a long talk about " taking advantage " and that

just because he has unlimited bathroom privileges doesn't mean he has overdo it.

Well, I have rambled on incessantly, as usual. I hope all is well with all of

you. Hugs to you and your wonderful family! Love,

Val

In a message dated 9/15/2004 8:52:20 PM Eastern Daylight Time,

Arthurnator@... writes:

>Hi Val,

>I remember the SUPERSONIC very well.I was just telling Allan last night how

>unfair it was.Robbie and were diagnosed around the same time and Robbie

>was way ahead of on the steroid taper and then BAM,major flare.

>I pray every night that you get your supersonic back.

>It just breaks my heart everytime that I look at the rad dudes picture of

>Robbie and .The way he would hold his arms close to his chest and the

sheer

>exhaustion in his eyes.You could tell he did not feel good at AJAO,yet he

>never complained,well mayby about going to the toy store at the mall,lol.

> may have his body back but I wish he was half the young man Robbie

>is.You have raised one great kid and someday mayby,just mayby 40 yrs from now

he

>will be president Carney.

>I think of you guys often and hope all your prayers are answered.Great things

>are in Robbie's future no matter what happens.He is absolutely incredible and

>so are you.

>Much love

>Becki

>

>

>

[Guest guest]

Hi Val:

" Babble " you crack me up.

Thank you for the information on the high bp and heart monitor. Both sounded

very scary. I am glad he is doing well with both of those aspects. I keep

wondering if Caitlin's palps are from dehydration. Can you be dehydrated and

not notice it visually?

Take care.

Patty

P.S. I have to agree with Robbie. Some hospital cafeteria food isn't to

bad:) Especially if you are starving LOL.

[Guest guest]

Hi Val:

Adding the monitor 12 hours later would have panicked me. I remember when

Caitlin was a baby she started having seizures. After a trip by ambulance, ER,

tests, another trip by ambulance to Children's Hospital in DC., etc. we were

finally taken to her room. The nurse got her checked in etc. and left. Around

11pm, when I was getting ready for bed, she comes in with a resuscitation

bag/kit. I am like, what the heck is that for! She said " well in case your

daughter stops breathing " ! I had asked them about this earlier and was told no

need to worry about that. So now I am flipping out, inside, but staying calm on

the outside. Needless to say I did NOT sleep at all that night for fear

Caitlin would stop breathing and I wouldn't know it. Thankfully, she had no

problems, whatsoever, and was released the next evening.

Take care.

Patty

[Guest guest]

Hi Patty,

You are welcome & and you are right - it was pretty scary - at times. I once

read that if you are thirsty, you are already in early stages of dehydration. I

think most people don't drink enough fluids, I guess you have to be pretty

dehydrated before you start seeing outward signs - I don't know. Robbie was so

sick that day - and his heart rate was elevated when we arrived at the hospital

- which only made them adding the monitor 12 hours later make me more crazy -

unless the IV fluids he was receiving weren't bringing his heart rate back to

normal as quickly as they expected it?

Well, gotta run - I hope you find out what is going on with Caitlin. Hugs!

Val

Rob's Mom (6,systemic)

[Guest guest]

Val:

Robbie has sure been through so much....but still, he is such an

incredibly strong kid. Wonder where he gets that from, huh?? His attitude

and courage and strong heart will carry him far, Val. I am hoping and

praying that things change soon for him and that one of the biologics

will answer all our prayers for Robbie.

As to Becki's remarks about the presidency, I may just have to write in a

vote this year for Carney!!

Love,

and Rob 15 Spondy

On Wed, 15 Sep 2004 20:52:20 EDT Arthurnator@... writes:

Hi Val,

I remember the SUPERSONIC very well.I was just telling Allan last night

how

unfair it was.Robbie and were diagnosed around the same time and

Robbie

was way ahead of on the steroid taper and then BAM,major flare.

I pray every night that you get your supersonic back.

It just breaks my heart everytime that I look at the rad dudes picture of

Robbie and .The way he would hold his arms close to his chest and

the sheer

exhaustion in his eyes.You could tell he did not feel good at AJAO,yet he

never complained,well mayby about going to the toy store at the mall,lol.

may have his body back but I wish he was half the young man Robbie

is.You have raised one great kid and someday mayby,just mayby 40 yrs from

now he

will be president Carney.

I think of you guys often and hope all your prayers are answered.Great

things

are in Robbie's future no matter what happens.He is absolutely incredible

and

so are you.

Much love

Becki