Val/Robbie update

[Guest guest]

Hi Val,

When you get the time please update on Robbie.My heart breaks for you guys.I

remember when Robbie and were just starting their journey and Robbie had

him licked.We had such good talks.Love you bunches and wish I could just head

your way.s little friend has been back on the steroids for about

4 weeks and is starting to get puffy cheeks.He's asking questions and getting

worried about Arthur comming back.

Love,hugs and prayers

Becki and 5 systemic

[Guest guest]

Hi Guys!

I typed a very long response yesterday, and tried and tried to send it and I

kept getting an error message and I finally gave up. I couldn't save it in AOL

or send it to another address, so I will give it another try today. I had hoped

to respond individually to everyone who sent well wishes - but I don't know if I

will ever get caught up. You are all the best and I appreciate you so much for

being there. I read a lot of posts yesterday & now only have a little over 300

to go - I was touched by so many and so concerned that so many of our little

heros are flareing now. Bayly telling his Mom he was sorry for his knee looking

bad made me cry & brave trying to push the pain down. I was very worried

to read about big Rob's blood showing up in the urine again - but relieved to

see that it seems to be an isolated re-occurence. There are so many other's

that I know I am not thinking of right now - but I have been really touched by

all or our brave ones. Wednesday I picked up some kind of cold/virus - and woke

up Thursday feeling like I'd been hit by a truck - I hurt all over (reminded me

of when Robbie tells me that he hurts all over) - and my joints hurt terribly

every time I tried to move, until the Motrin gained control. It made me think

even more about how much pain our heros - children and adults alike - on this

group face so often.

Robbie is still having his ups and downs - but the ups seem to be lasting longer

and downs aren't so low - so I guess we are going in the right direction. He

still has some pain here and there - and since the rheumy let him start pe

(self-limiting, and no contact sports) Robbie wanted to know when he could start

playing baseball again. He balked when I told him I wanted to see a pain free

week first. He told me that he may not have a pain free week - and then he

would miss all of the games. We talked about it for awhile & I decided to let

him play, if he felt up to it on Wednesday, but told him I would have my own

criteria to watch for that I wasn't sharing with him - but should I feel it

necessary he wouldn't play. Tuesday afternoon we practiced a little (we were

home early from school from a field trip - where I think I caught the cold)

anyway - I pitched some pop-ups and grounders for him to catch, let him practice

batting and had him " run the bases " twice in the backyard to see how he would

handle it & to not send him back cold to play. He did well, but had arm and leg

pain that evening. I told him I didn't know about playing - but he seemed to

feel better on Wed. morning and said he'd had no problems at school so he

played. He was on cloud nine! He made two good solid hits, and subsequent runs

& ran the ball to home and got the runner out once. He was so excited. His

team lost - but Rob was so excited to be playing. One of the Mom's asked me

what I gave him to keep him so focused on the game. He appreciates being there

so much that he gives it all he has. He is like that with so much of what he

does. I don't know if I made the right decision - he had some discomfort that

night - mostly in the knees - (but what was he hiding?) The coach welcomed him

back (we had of course talked) and told Rob he was missed and had the team say

" Welcome Back " also. No apparrent repercusions - so I am holding my

breath. He played again this afternoon - and is doing well. Again - made two

runs, and got a guy out & his team won this time and he is floating. I'll have

to see how he is doing as the evening progresses. He had some discomfort after

school on Thursday, but overall I feel good about how he is doing. Though I am

worried about letting him play so soon. I have to run now - we have a lot of

errands to catch up on today - but I will try to post again real soon - there

are some direct questions that I did want to answer & I will get back to you

soon. Thanks again everyone.

Val

Rob's Mom (6,systemic)

[Guest guest]

Hi Val,

As hard as it is letting Robbie try,it is the best thing you can do for

him.He is such a trooper.All these kids want is to be kids,no matter what the

outcome may be.

Hip,Hip,Hooray for Robbie!!!! Future baseball star.

Love and Hugs

Becki and 5 systemic

[Guest guest]

Val, I know when its your child it is always their health and well being

first and foremast and rightly so, but that spirit and determination is

what is going to get Robbie through the worst of times, in battling this

jra.

When I attended the Mich Sch for the Blind each year at the end of the

school session they would have achievement awards, for a variety of

things. One of which was named the True Grit award for over coming your

disability. In the four years that I attended the school I seen three

very deserving students receive this award, one of whom was a friend of

mine, Leonard Gross.

Leonard walk with a cane and was almost completely blind, his legs were

always bent at the knees and he wasn't able to but shuffle his feet as he

walked. I was witness to many a times when Leonard would fall, hitting

the concrete and receiving some very nasty scrapes. Yet he always picked

him self up to continue on again. I didn't know it at the time what was

the cause of Leonard leg condition but was to learn many years later, it

was jra!

I told Leonard some years later at a Alumni Reunion just exactly how

much I admired his courage, strength and determination. And that on days

when the pain was unbearable in my feet, I'd just think of him as he keep

going, regardless how far behind the group he trailed.

As we strolled our way to the local pizza place or for the weekend treks,

to the local watering hole!!! Leonard did walk a bit more 'briskly' on

the way back from there...lol as did we all, not real straight but

briskly!

But its that kind of heart, courage, strength and determination I see in

these kids, when I hear how much pain, they are willing to endure to

participate in the game.

Little Robbie my young friend, I will be rooting for you when your out

there playing ball. Get a HOMER! for Old Uncle Rusty!

HPLTA

[Guest guest]

Great job, Robbie! I think it is so great that he is able to play. I

think you made the right choice to let him try. It is so important for

their emotional well being. Michele (17, pauci & spondy)

Re: Val/Robbie update

Hi Guys!

I typed a very long response yesterday, and tried and tried to send it

and I kept getting an error message and I finally gave up. I couldn't

save it in AOL or send it to another address, so I will give it another

try today. I had hoped to respond individually to everyone who sent

well wishes - but I don't know if I will ever get caught up. You are

all the best and I appreciate you so much for being there. I read a lot

of posts yesterday & now only have a little over 300 to go - I was

touched by so many and so concerned that so many of our little heros are

flareing now. Bayly telling his Mom he was sorry for his knee looking

bad made me cry & brave trying to push the pain down. I was very

worried to read about big Rob's blood showing up in the urine again -

but relieved to see that it seems to be an isolated re-occurence. There

are so many other's that I know I am not thinking of right now - but I

have been really touched by all or our brave ones. Wednesday I picked

up some kind of cold/virus - and woke up Thursday feeling like I'd been

hit by a truck - I hurt all over (reminded me of when Robbie tells me

that he hurts all over) - and my joints hurt terribly every time I tried

to move, until the Motrin gained control. It made me think even more

about how much pain our heros - children and adults alike - on this

group face so often.

Robbie is still having his ups and downs - but the ups seem to be

lasting longer and downs aren't so low - so I guess we are going in the

right direction. He still has some pain here and there - and since the

rheumy let him start pe (self-limiting, and no contact sports) Robbie

wanted to know when he could start playing baseball again. He balked

when I told him I wanted to see a pain free week first. He told me that

he may not have a pain free week - and then he would miss all of the

games. We talked about it for awhile & I decided to let him play, if he

felt up to it on Wednesday, but told him I would have my own criteria to

watch for that I wasn't sharing with him - but should I feel it

necessary he wouldn't play. Tuesday afternoon we practiced a little (we

were home early from school from a field trip - where I think I caught

the cold) anyway - I pitched some pop-ups and grounders for him to

catch, let him practice batting and had him " run the bases " twice in the

backyard to see how he would handle it & to not send him back cold to

play. He did well, but had arm and leg pain that evening. I told him I

didn't know about playing - but he seemed to feel better on Wed. morning

and said he'd had no problems at school so he played. He was on cloud

nine! He made two good solid hits, and subsequent runs & ran the ball

to home and got the runner out once. He was so excited. His team lost

- but Rob was so excited to be playing. One of the Mom's asked me what

I gave him to keep him so focused on the game. He appreciates being

there so much that he gives it all he has. He is like that with so much

of what he does. I don't know if I made the right decision - he had

some discomfort that night - mostly in the knees - (but what was he

hiding?) The coach welcomed him back (we had of course talked) and told

Rob he was missed and had the team say " Welcome Back " also. No

apparrent repercusions - so I am holding my breath. He played again

this afternoon - and is doing well. Again - made two runs, and got a

guy out & his team won this time and he is floating. I'll have to see

how he is doing as the evening progresses. He had some discomfort after

school on Thursday, but overall I feel good about how he is doing.

Though I am worried about letting him play so soon. I have to run now -

we have a lot of errands to catch up on today - but I will try to post

again real soon - there are some direct questions that I did want to

answer & I will get back to you soon. Thanks again everyone.

Val

Rob's Mom (6,systemic)