Val and Robbie

[Guest guest]

Hi Becki,

Glad to see another young man has been bitten by the baseball bug!!!

Who cares which sport, as long as he's bitten and loves it!!!

Stacia

[Guest guest]

Val,

I am going bonkers wanting to know how little Rob is doing.I pray no news is

great news!!!

You have been in all our thoughts lately,even Allan.He is SLOWELY catching on.

Everything is crossed that Mr.Rob is fine and not suffering any systemic

symptoms and the NIH can figure out a plan.

never had another systemic flare after 25mg MTX,just arthritis in his

stubborn lft ankle.

He has made it very clear that he is sick of shots.We have our last study

visit due between Aug and Sept.I am curious about every other week shots of

Humira.

Much love and lots of hugs!

Becki and 6 systemic

[Guest guest]

Hey guys!

I am so sorry to have been MIA for so long - but between trying to pack to move,

looking for a house, getting to and from work and getting Robbie to baseball

games - and practice for the tournament team I don't know half the time which

direction I am going. Robbie tried out for the tournament team and was selected

- this I probably already told you guys - and it means that we have been having

baseball practice every Sunday beginning on Mother's Day - and the games will be

every weekend (sometimes more than one day) beginning the last weekend of the

month through most of July. We committed to this before I knew I would be

moving! The regular spring season is still in full swing - the last game is

this Friday. We have had a lot of rain out games, so he had a game last night,

has one tonight and then the last day of school is Thursday - still have to find

time to go get the teacher's gift & go to work everyday! My car had major

problems last week which landed it in the shop for two days and took half the

money I'd saved for a deposit for a house. The housing market is so crazy -

that to rent another house in the same area is going to cost me at least 250

more a month - probably more in most cases. I'm looking at some townhouses -

which are renting anywhere from 50 - 300 more than I am paying now for the house

I am in - but that means giving up the swing set fort (which he is starting to

out grow) and his basketball hoop - which he isn't so happy giving up. I'm

trying to not pull my hair out - and may end up moving into an apartment for

awhile if something doesn't come through soon. So - not sleeping great and

stressing some - but it will all work out - so there is my long explanation for

being MIA - and I still havent't gotten to the real important stuff!!

Robbie is doing well - we are down to 3mg qd of the Prelone. Have been for a

couple of weeks now, I guess, so it's time to look at another drop - but I am

not sure if I want to make another drop before the move is over - just because I

have been having nightmares of an NIH admission, full flare on moving day - and

I am walking around feeling pretty apprehensive as it is. No fevers, no rashes.

He started having knee pain off and on a week and a half ago. Sometimes just

one knee, sometimes both. Probably related to activity - because he has been

really active on a continual basis lately. There were a couple of days when we

were out house hunting when he felt really warm - but by the time we were home

he'd cooled off and no signs of fever. (It has been really hot here!) He

reminds me that he had pain after practice and games during the fall baseball

season - but I'm not reminding him that the fall season was smack dab in the

middle of two major flares! His heel pain has stayed away for the most part -

which is great, though he has pain there sometimes after playing baseball. He

has only had one minor episode of back pain - which resolved quickly.

He has been playing really well this season - and he is all smiles when he is on

the field. Last Friday he was hit by a baseball while running to first base -

and went down hard (he was actually at first base when he was hit - the player

covering first was looking toward the outfield and didn't realize that the short

stop had gotten the ball and was throwing it his way) - was down for

quite awhile - his coach was by 3rd base when he was hit- and he couldn't have

gotten to any quicker if he'd flown. I was at the fence, entering where

the batters go in at home plate - but stood there, waiting - tears in my eyes -

and the coach had called another player out to run for - but after that

he held his hand up to stop me from coming to the base, and told me he was ok.

Finally, after what seemed like forever, stood up, and wouldn't let the

other kid run for him - he wasn't going to let that ball stop him! I went back

to my seat, and one of the other Moms said " It looks like he wasn't even crying

when he got up " I said, " Yeah, but I nearly am " I kept having visions of

fractures - the next morning, my friend who's an xray tech said she spent

half the night with a 34 year old in the OR that got knocked over by a runner

playing first base with multiple leg fractures. Yikes! After he came off the

field (during the first 5 innings there is a 5 run limit - so they'd made their

5th run before was able to come in) - so he was taking off his helmet and

getting his glove to go back out and I asked him to come over a minute and he

said " MOM, I'm OK " so I wasn't permitted to check out his leg there at the field

- so I said " Well, then drink some gatorade so I'll feel better! " Too much.

Robbie woke me up at 3:00 am complaining of stomach pain - another symptom we've

had in the past when he was beginning to flare - but he seemed to feel better

this morning - though he complained of knee pain. His knee didn't feel any

warmer than the other - but there was a red spot about the size of a half dollar

on his knee. He doesn't remember hitting or bumping it (do they ever?) - so I

am watching and trying not to worry.

Well, I have tons of news - a lot more has been going on - but I have to get

back to work. I will try to get everyone more caught up soon - but as far as

Robbie's health you guys are up to date! Thanks for being there - sorry to keep

you waiting!

Love you guys!

Val

Rob's Mom (7,systemic)

Re: Val and Robbie

Val,

I am going bonkers wanting to know how little Rob is doing.I pray no news is

great news!!!

You have been in all our thoughts lately,even Allan.He is SLOWELY catching on.

Everything is crossed that Mr.Rob is fine and not suffering any systemic

symptoms and the NIH can figure out a plan.

never had another systemic flare after 25mg MTX,just arthritis in his

stubborn lft ankle.

He has made it very clear that he is sick of shots.We have our last study

visit due between Aug and Sept.I am curious about every other week shots of

Humira.

Much love and lots of hugs!

Becki and 6 systemic

[Guest guest]

-val.. its good to hear from you.... im so glad that Robbie is still

doing well and doing so fantastic in baseball, hes such a hero!!!! I

wish we could have gotten to meet you guys this year ((

Your stress level must be though the roof.... i hope things calm

down and SOON for you...I really admire you and your ability to do

all you do....you are an amazing mom to Robbie, you advocate for

him, you support his dreams, you work full time and are supportive

to so many on this list.

Good luck house hunting, im sure the perfect place will show up

soon...

hugs Helen and (7,systemic)

-- In , carneyval@a... wrote:

> Hey guys!

> I am so sorry to have been MIA for so long - but between trying to

pack to move, looking for a house, getting to and from work and

getting Robbie to baseball games - and practice for the tournament

team I don't know half the time which direction I am going. Robbie

tried out for the tournament team and was selected - this I probably

already told you guys - and it means that we have been having

baseball practice every Sunday beginning on Mother's Day - and the

games will be every weekend (sometimes more than one day) beginning

the last weekend of the month through most of July. We committed to

this before I knew I would be moving! The regular spring season is

still in full swing - the last game is this Friday. We have had a

lot of rain out games, so he had a game last night, has one tonight

and then the last day of school is Thursday - still have to find

time to go get the teacher's gift & go to work everyday! My car had

major problems last week which landed it in the shop for two days

and took half the money I'd saved for a deposit for a house. The

housing market is so crazy - that to rent another house in the same

area is going to cost me at least 250 more a month - probably more

in most cases. I'm looking at some townhouses - which are renting

anywhere from 50 - 300 more than I am paying now for the house I am

in - but that means giving up the swing set fort (which he is

starting to out grow) and his basketball hoop - which he isn't so

happy giving up. I'm trying to not pull my hair out - and may end

up moving into an apartment for awhile if something doesn't come

through soon. So - not sleeping great and stressing some - but it

will all work out - so there is my long explanation for being MIA -

and I still havent't gotten to the real important stuff!!

>

> Robbie is doing well - we are down to 3mg qd of the Prelone. Have

been for a couple of weeks now, I guess, so it's time to look at

another drop - but I am not sure if I want to make another drop

before the move is over - just because I have been having nightmares

of an NIH admission, full flare on moving day - and I am walking

around feeling pretty apprehensive as it is. No fevers, no rashes.

He started having knee pain off and on a week and a half ago.

Sometimes just one knee, sometimes both. Probably related to

activity - because he has been really active on a continual basis

lately. There were a couple of days when we were out house hunting

when he felt really warm - but by the time we were home he'd cooled

off and no signs of fever. (It has been really hot here!) He

reminds me that he had pain after practice and games during the fall

baseball season - but I'm not reminding him that the fall season was

smack dab in the middle of two major flares! His heel pain has

stayed away for the most part - which is great, though he has pain

there sometimes after playing baseball. He has only had one minor

episode of back pain - which resolved quickly.

>

> He has been playing really well this season - and he is all smiles

when he is on the field. Last Friday he was hit by a baseball while

running to first base - and went down hard (he was actually at first

base when he was hit - the player covering first was looking toward

the outfield and didn't realize that the short stop had gotten the

ball and was throwing it his way) - was down for quite

awhile - his coach was by 3rd base when he was hit- and he couldn't

have gotten to any quicker if he'd flown. I was at the

fence, entering where the batters go in at home plate - but stood

there, waiting - tears in my eyes - and the coach had called another

player out to run for - but after that he held his hand up to

stop me from coming to the base, and told me he was ok. Finally,

after what seemed like forever, stood up, and wouldn't let

the other kid run for him - he wasn't going to let that ball stop

him! I went back to my seat, and one of the other Moms said " It

looks like he wasn't even crying when he got up " I said, " Yeah, but

I nearly am " I kept having visions of fractures - the next morning,

my friend who's an xray tech said she spent half the night

with a 34 year old in the OR that got knocked over by a runner

playing first base with multiple leg fractures. Yikes! After he

came off the field (during the first 5 innings there is a 5 run

limit - so they'd made their 5th run before was able to come

in) - so he was taking off his helmet and getting his glove to go

back out and I asked him to come over a minute and he said " MOM, I'm

OK " so I wasn't permitted to check out his leg there at the field -

so I said " Well, then drink some gatorade so I'll feel better! " Too

much.

>

> Robbie woke me up at 3:00 am complaining of stomach pain - another

symptom we've had in the past when he was beginning to flare - but

he seemed to feel better this morning - though he complained of knee

pain. His knee didn't feel any warmer than the other - but there

was a red spot about the size of a half dollar on his knee. He

doesn't remember hitting or bumping it (do they ever?) - so I am

watching and trying not to worry.

>

> Well, I have tons of news - a lot more has been going on - but I

have to get back to work. I will try to get everyone more caught up

soon - but as far as Robbie's health you guys are up to date!

Thanks for being there - sorry to keep you waiting!

> Love you guys!

> Val

> Rob's Mom (7,systemic)

> Re: Val and Robbie

>

>

> Val,

> I am going bonkers wanting to know how little Rob is doing.I pray

no news is

> great news!!!

> You have been in all our thoughts lately,even Allan.He is SLOWELY

catching on.

> Everything is crossed that Mr.Rob is fine and not suffering any

systemic

> symptoms and the NIH can figure out a plan.

> never had another systemic flare after 25mg MTX,just

arthritis in his

> stubborn lft ankle.

> He has made it very clear that he is sick of shots.We have our

last study

> visit due between Aug and Sept.I am curious about every other week

shots of

> Humira.

> Much love and lots of hugs!

> Becki and 6 systemic

>

>

>

[Guest guest]

Val,

I am so happy to hear that Robbie's taper is going so well, and that he

is fully active in baseball once again! It made my whole week to hear

that!

I don't blame you for wanting to wait on another pred drop before your

move is completed...you are very wise to do that.

I'll be keeping you in prayer to find a new place that will work well for

you and Robbie and in the same school district...

Keep us posted when you can!

and Rob 16 Spondy

[Guest guest]

Val - If my memory serves me correctly you are from MN, right? We live in MN

too!(andria) and Grant is also playing Fall Ball this year. We drive down

to the cities for 5 Sundays and play 2 games. Grant is 12, is in 7th grade, AND

plays 2nd base. I am curious if we have ever crossed paths!!!!

& Grant (12, psoriatic/uveitis)

>

>

> Hey Becki!!!!

>

> Rob is doing fine - and he is playing Fall Ball and busy with scouts and

chorus at school. He is in 7th Grade this year!!!!! It amazes me how time is

flying. 's 12 birthday was last week!

>

> I keep up with reading the posts here - but don't respond too often, unless I

think I have something to add. Work has me swamped & I have had some health

issues this year that have required my attention. All is well & I certainly have

faced nothing like our brave children have in their short lives.

>

> 's baseball season is going well - though we have had a few rainouts.

His coach is moving him from 2nd base to short stop a lot and he pitched an

inning on Sunday. (Struck out two). He is happiest on the ballfield.

>

> 's JRA is held at bay - he has had some occasional ?stiffness and aches

- but it's been two years since he's had a flare and he had perfect attendance

at school last year!

>

> I have read your posts about 's football career holding my breath!

Football terrifies me - and is certainly not in 's future - but how

exciting for our !!

>

> I hope all is well with your hubby & Shelby!? Still looking forward to kicking

back on that porch sometime!? Love ya!!

>

> Val

>

> Rob's Mom (12,systemic)

>

> Val and Robbie

>

>

>

>

>

>

>

> Has anyone heard anything from Val about Robbie? This is s SoJRA

buddy,diagnosed around the same time with the same subtype.

> Liz,surely you know something...

> Anyway, Robbie is the strongest little fighter I know and praying he is well

and playing Fall Ball for his all-star baseball team AGAIN

> Becki and 11 SoJRA

>

>

[Guest guest]

Val,

   Thank you so much for the update on Robbie.I get nervous when so much time

has gone by without an update.I know it means all is most likely going well but

I still worry.

Short stop,wow..... has never played 2nd or SS due to his working memory

disorder,just way to much to remember but is a great cacher,3rd and 2st baseman

and he has had his own experiances on the mound.Not super fast but very accurate

so kids love to swing and miss alot,he has a sweet change up that he learned

from watching YouTube.He still has alot of trouble hitting the ball since kid

pitch.Do not know if it's from the processing disorder that he also has or his

vision.

So happy to hear Rob is doing very well and Arthur isn't slowing him down a bit.

And some day we will have our coffe and Dr.Pepper on the porch.

Love you so much!

Becki and 11

________________________________

From: " carneyval@... " <carneyval@...>

Sent: Tuesday, October 6, 2009 9:42:57 AM

Subject: Re: Val and Robbie

 

Hey Becki!!!!

Rob is doing fine - and he is playing Fall Ball and busy with scouts and chorus

at school. He is in 7th Grade this year!!!!! It amazes me how time is flying.

's 12 birthday was last week!

I keep up with reading the posts here - but don't respond too often, unless I

think I have something to add. Work has me swamped & I have had some health

issues this year that have required my attention. All is well & I certainly have

faced nothing like our brave children have in their short lives.

's baseball season is going well - though we have had a few rainouts. His

coach is moving him from 2nd base to short stop a lot and he pitched an inning

on Sunday. (Struck out two). He is happiest on the ballfield.

's JRA is held at bay - he has had some occasional ?stiffness and aches -

but it's been two years since he's had a flare and he had perfect attendance at

school last year!

I have read your posts about 's football career holding my breath! Football

terrifies me - and is certainly not in 's future - but how exciting for

our !!

I hope all is well with your hubby & Shelby!? Still looking forward to kicking

back on that porch sometime!? Love ya!!

Val

Rob's Mom (12,systemic)

Val and Robbie

Has anyone heard anything from Val about Robbie? This is s SoJRA

buddy,diagnosed around the same time with the same subtype.

Liz,surely you know something...

Anyway, Robbie is the strongest little fighter I know and praying he is well and

playing Fall Ball for his all-star baseball team AGAIN

Becki and 11 SoJRA