Update

[Guest guest]

In a message dated 8/31/2003 12:49:50 AM Eastern Standard Time, MKANTZLE@... writes:

The secret is to get out of the hospital fast before they kill you.

: It is good to see that you still have your sense of humor after such a trying day. My heart goes out to you. It seems they just don't care when you have diabetes and have to go through such awful tests and procedures.

Glad that you were able to hook up with someone who has had a transplant. I am sure that you will get some good information from him.

Take care and don't be so hard on yourself. You certainly can feel sorry for yourself. You went through a lot. You always seem to spring back so quickly.

Love and prayers -

gina

[Guest guest]

LOL ! Indeed you did the right thing to get

out of that hospital FAST!!! That

milkshake sounded wonderful! Boy, I

am thirsty~

Debby

Re: [ ]

UPDATE

Well, guys a lot has happened in the

last week. I've talked with the coordinator at the Cleveland Clinic and

she gave me the name of a man here in VA who was transplanted at

Cleveland. He called me and we had a long conversation. My fears

about the distance from the hospital were calmed after this conversation as he

said it went smoothly and he would not consider having it done anywhere else.

I had my EGD and banding done on Friday. 7 bands placed. Won't go

into detail but it was a long trying ordeal.

The bad news is the AIH had flared again and we are starting up with a

higher dose of Prednisone. (20 mg's). I'm so bummed because it took

so long to get down to 5 mg's and here we start the roller coaster ride

again. This will also cause me to have to up the Glucophage as my blood

sugars will get worse on the higher dose Prednisone. So here we go with

more pills. I take so much that it's crazy. They also started a 5

day course of antibiotics after I received some IV after EGD. We waited

until 4 o'clock and the Hepatologist hadn't come back to talk with us. I

was hungry and tired and worn out. When the nurse came by an asked me if

I needed anything I said yeah " A cheeseburger and chocolate

shake. " She laughed. I didn't. I told my family that was

enough. I put my clothes on and left. I did have my cheeseburger

and chocolate shake. Not a good thing for a diabetic to have but I just

craved it and figured after the day I had I deserved it. Best damn shake

I've ever had.

Sorry to ramble. The good news is they banded the varices and hopefully

this will prevent and bleeds in the near future. I need to stop feeling

sorry and get on with things. I'm just so tired of fighting the

system. It doesn't seem right that we had to be there all day long.

I was worn out. The secret is to get out of the hospital fast before they

kill you.

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[Guest guest]

Hi,

Well, I just re-sent two of the recent articles about Vioxx, thinking

that it might be worthwhile to print them out and present to doctors who

might still be wary of prescribing Vioxx for the treatment of JRA. While

it hasn't yet received official FDA approval for pediatric use it is

being used and has proven to be effective. Now that the pediatric study

results are in, I'm sure it won't be too long before they change the

label to include indications for children between the ages of two and

seventeen.

Aloha,

Georgina

Tammy Fiffick wrote:

> Vioxx is FDA approved for children or it couldn't be

> dispensed and it wouldn't be approved for payment by the

> insurance carriers. We have a closed end pharmacy at work

> and the pharmacist just gave me that " look " saying " Tammy,

> now you KNOW it would be approved or we couldn't dispense

> it " ...I just wanted to make sure for you. I guarantee you

> that it is. Who is telling you that it's not approved???

> Gabby has been on it for 2 years now (since she was 3) and

> has had no problems whatsoever with it. Thanks!

>

> Tammy

[Guest guest]

-Thanks for the info on vioxx... Nicks doc had no problem putting

on vioxx, her only concern was because it " offically " was

not approved for use in children under 18, some insurance companies

use this as a " cop out " for not covering it. Her only concern was

getting it covered by insurance. We had quite the talk about

insurance companies and not covering medications needed for these

children. She says a lot of insurances want to see that cheaper meds

were tried and didnt work/caused problems etc, before they cover the

more expensive ones. This saddens me, the doctors know these kids

and whats best of each of them, as Nicks doctor says everyone of her

JRA patients are different. The Insurance companies need to let the

doctors do their jobs, knowing whats in the kids best interest.

Becki, i know if/when time comes for to go onto MTX ill put

him on it with no problem, thanks to all the info everyone shares on

this list. If i was not on the list and didnt know better, talk of

mtx would freak me out. Just another one of the great benefits of

having this forum to read/learn and discuss )))

BTW Nicks 1st vioxx pills went down with no problem, hes pretty

proud of himself. Hes like the " big boys " now ( i have 2 boys on

ADHD medications) I will say that im not sorry to see the end of

that messy sticky orange stuff!!! and though our insurances pharmacy

program, ill get 3 months of vioxx for one months co pay!!

HUgs Helen and ( 6, systemic)

-- In , Georgina <gmckin@g...> wrote:

> Hi,

>

> Well, I just re-sent two of the recent articles about Vioxx,

thinking

> that it might be worthwhile to print them out and present to

doctors who

> might still be wary of prescribing Vioxx for the treatment of JRA.

While

> it hasn't yet received official FDA approval for pediatric use it

is

> being used and has proven to be effective. Now that the pediatric

study

> results are in, I'm sure it won't be too long before they change

the

> label to include indications for children between the ages of two

and

> seventeen.

>

> Aloha,

> Georgina

>

> Tammy Fiffick wrote:

> > Vioxx is FDA approved for children or it couldn't be

> > dispensed and it wouldn't be approved for payment by the

> > insurance carriers. We have a closed end pharmacy at work

> > and the pharmacist just gave me that " look " saying " Tammy,

> > now you KNOW it would be approved or we couldn't dispense

> > it " ...I just wanted to make sure for you. I guarantee you

> > that it is. Who is telling you that it's not approved???

> > Gabby has been on it for 2 years now (since she was 3) and

> > has had no problems whatsoever with it. Thanks!

> >

> > Tammy

[Guest guest]

Helen,

Congradulations on the Vioxx,you can't beat 3months for the price of one.I hope it helps and Nick's tummy troubles end.Insurance companies can be so weard.Ours will not cover the injectable MTX because it's labaled as being injected in a doctors office and they will not cover the folic acid because it's a vitamin yet once the medical review board received all of s medical records they approved for Enbrel in less then 2 hours(said it could take 2 weeks)a case worker called me up crying.I think alot of insurance companies are staring to realize the disability rate of RA and it's better to cover the drugs then to pay out full or partial disability or the joint replacement surgeries.I hope Nick has a pain free winter.

Hugs

Becki and 5systemic

[Guest guest]

Ellen,

The problem with taking a prebiotic in the same capsule as the probiotic

is that it lends a false sense of security, of doing the right thing.

It's hardly enough to keep the probiotic alive, let alone being nearly

the three teaspoons daily requirement to populate the bowel with

favourable bacteria.

In this case there's the added problem that their ingredient of choice,

FOS, promotes the growth of many kinds of bacteria, including the ones

that distorted your bowel flora ratio enough for the yeasts to move in.

You should read the inulin science on my site, where this very question

was addressed in the studies:

http://members.shaw.ca/duncancrow/

Duncan Crow

>

>

> Well I went back to my doctor today for a re-check. I've been doing

> this candida diet for maybe 2 months now or so. I have lost about 15 lbs

> which is great and I feel 100% better. Not perfect but almost. I asked

> about the prebiotic too & it is in with my probiotic.. it's something

> called FOS. She just added Yeast Max which is some sort of yeast cleanse

> for 2 weeks.

>

> Thanks everyone for all the answers to my questions,

> Ellen

[Guest guest]

> My next question: Are any of you out there sorry you had fusion surgery and

why? <

Hmmmm...even though I am still in pain, I would have to say I don't regret

having it done. The first couple of weeks after the surgery...oh yes, lots of

pain and regrets. But now that the trauma of the surgery is over and we have

settled into a day to day existence...I don't regret it.

It did help with a lot of the pain I felt when I was doing nothing...and I would

have always wondered if I hadn't had the surgery...did I try every option? Could

I have done more? With a 50/50 chance of success, it is not a surgery to take

lightheartedly. But for me, it was the right decision.

Not sure if this helps, or I am just rambling on and on with pain meds affecting

my thought process.

Viv in GA

[Guest guest]

>With a 50/50 chance of success, it is not a surgery to take

>lightheartedly. But for me, it was the right decision.

Is that the success rate, 50-50?

>Not sure if this helps, or I am just rambling on and on with pain

>meds affecting my thought process.

Not at all, Viv. Thanks for the frank answer. I really do

appreciate it.

[Guest guest]

I had spine fusion of L4-L5 done August 2001, I am glad that I had it done.

The fusion did not take, but for 6 months I was almost pain free,

difficultly walking never went away for me. I am trying to schedule repair

surgery to stabilize the fusion with a cage, hopefully this will be done in

April of this year.

I have had spine problems for almost 40 years now due to a car accident and

have had difficultly walking since then. I can't walk over a block, shopping

is a chore, but I will not use a wheel chair in the store. One year after

surgery someone suggested water jogging to me. I decided to try it and ended

up doing an hour a day which helped quite a bit. Would I have the surgery

again, my answer is definitely yes.

For my next surgery I know that I will be more prepared, I have organized my

house so that I do not have to bend or twist for anything, moved to a one

story house from a three story townhouse (stairs were my downfall after

surgery), and have made arrangement to use a local hotel pool starting six

weeks after surgery.

Prior to my surgery I had acupuncture with pain medicine, two years straight

of therapy, EMGs, MRI, Spinal taps (3), addicted to pain medicine, flat on

my back for months due to pain, and numbness on my one side.

Did I make the right decision, yes, yes, yes, and I am doing it again.

Sherry in VA

Re: Update

> My next question: Are any of you out there sorry you had fusion surgery

and why? <

Hmmmm...even though I am still in pain, I would have to say I don't regret

having it done. The first couple of weeks after the surgery...oh yes, lots

of pain and regrets. But now that the trauma of the surgery is over and we

have settled into a day to day existence...I don't regret it.

It did help with a lot of the pain I felt when I was doing nothing...and I

would have always wondered if I hadn't had the surgery...did I try every

option? Could I have done more? With a 50/50 chance of success, it is not a

surgery to take lightheartedly. But for me, it was the right decision.

Not sure if this helps, or I am just rambling on and on with pain meds

affecting my thought process.

Viv in GA

_____

[Guest guest]

> Is that the success rate, 50-50? <

That is what my doctor told me...and what several others (on or off list) have

shared also.

Viv in GA

[Guest guest]

i had my fushion nov4 and im returning to my doc on the 23rd.

after the trama of surgery for the first month i was fine but now im back

hurting just as bad as befor but now my neck is stable (c/3/4 was depressing

the cord )

so yeah i would do it over again

[Guest guest]

Helen,

I'm so sorry to hear that Nick is having such a difficult time. I

hope his fever goes down quickly, I know it's frightening when it

goes up so high. Gosh, my heart just goes out to him and to you. It

sounds like your Doc is taking this very seriously, as it should be.

I'm new to all of this myself so I can't offer you any information

about the disease, but I did want to tell you that you and your son

are in my thoughts. I wish I could offer more than just that, please

know that I care (as do so many) about you and your son.

Regarding the 504 plan, I am doing one for Christian. I do know that

the IEP is a seperate document and a 504 plan is the proper mode for

accomodations. Liz has agreed to attend my 504 plan meeting and has

already offered great ideas as to what should be included. The

social worker at my son's school was very pleased that

an " experienced JRA MOM " was willing to attend this very important

meeting. Maybe Liz could offer advice, suggesstions for the 504.

Again, know you are not alone. Your Doc obviously sees that you're a

loving Mother who wants her son to get better. We want that too.

Where do you live?

Love,

>

[Guest guest]

Thanks for the support and the 504 info.. i remember someone posted a list of things ( patty, perhaps????) to include a few weeks ago. I guess i should look back and re-read that post seeing as it might be a little more relevent now.

I really appreciate the support right now... its strange, Nick has had this for nearly a year, but today its really hitting home that its real. Im feeling pretty sad tonight.

hugs Helen, mom to (systemic,6): > > > There are now three new levels of MSN Hotmail Extra Storage! Learn more.

[Guest guest]

Dear Helen, Our thoughts are with you. n has been sick today, and sometimes it helps just to have a good cry. This disease can get overwhelming, and it seems no one understands it like the parents. Sometimes it is exhausting to day in and day out have a sick child. You are a great mother. God bless. (n, 15, systemic)

RE: Re: Update

Thanks for the support and the 504 info.. i remember someone posted a list of things ( patty, perhaps????) to include a few weeks ago. I guess i should look back and re-read that post seeing as it might be a little more relevent now.

I really appreciate the support right now... its strange, Nick has had this for nearly a year, but today its really hitting home that its real. Im feeling pretty sad tonight.

hugs Helen, mom to (systemic,6): > > >

There are now three new levels of MSN Hotmail Extra Storage! Learn more.

[Guest guest]

Helen - My thoughts and prayers go out to you. What a grat advocate

you are for your son! That is amazing!

Alia

> RE: Re: Update

>

>

> Thanks for the support and the 504 info.. i remember someone

posted a list of things ( patty, perhaps????) to include a few weeks

ago. I guess i should look back and re-read that post seeing as it

might be a little more relevent now.

>

> I really appreciate the support right now... its strange, Nick

has had this for nearly a year, but today its really hitting home

that its real. Im feeling pretty sad tonight.

>

> hugs Helen, mom to (systemic,6)

>

>

>

>

>

> : > > >

>

>

> --------------------------------------------------------------------

----------

> There are now three new levels of MSN Hotmail Extra Storage!

Learn more.

>

> --------------------------------------------------------------------

----------

>

[Guest guest]

In a message dated 1/30/04 9:36:06 PM Eastern Standard Time,

hburger64@... writes:

<< Nick already has a IEP for speech, can his requirements for the JRA be

added to that??? or do we need a separate plan???? >>

Hi Helen:

Sorry to hear that Nick still isn't feeling well.

Sounds like you have yourself one heck of a rheumy. Are you pleased she is

now getting aggressive?

Caitlin has an IEP in place too. When I called the school and made some

extra requests I thought it would have to go through an IEP Amendment, but they

said they could do it without it. We requested: Extra set of books at home

(got those), more time between each and every class (so she doesn't get whacked

with all those kids in the hallway at the same time - Caitlin is also petite

and let me tell you some of those middle school kids are bigger than I am, and

I'm not that short and by no means tiny LOL, and they are still bigger), no PE

for now, limited writing, half days to start back with and continued home

bound instruction for any help getting completely caught up and for one class

that

she will only be in for (half-day) about 15 minutes (but she's ahead in this

class already). They agreed to all of this without any problem or IEP amend.

Maybe your school can do the same. Although the alphasmart might have to be

part of the amendment.

<< a ton of paperwork to read, a book the docs lending me about raising a

child with arthritis, a ton of scripts we headed over to the hospital for

labs.>>

What type of paperwork? What is the name of the book? I should really go to

the book store and see what they have on children with arthritis.

<< Nick really does have JRA, i guess a part of me always hoped it would just

go away and not get worse. I was wrong. Reality is hitting home.>>

Helen what meds has Nick been on before yesterday's appt? Remind me again:

When did he first get sick? How is your little guy today? I hope the meds

kick in ASAP and little Nick is feeling better and more comfortable soon.

Take care.

Patty

[Guest guest]

Holly, every year has a classmate assigned to help her during fire drills and bus evacuations, that way no matter how she is feeling thre is always someone there. Being she isnt a bus student, that is not much of an issue, but something they always address before field trips........

Luv and hugs,

Aj

[Guest guest]

.

Thanks for the support ))) hows m Feeling today?? i hope shes doing better....

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: "WILLIAM PRICE" >Reply- >>Subject: Re: Re: Update >Date: Fri, 30 Jan 2004 20:08:44 -0800 > >Dear Helen, Our thoughts are with you. n has been sick today, and sometimes it helps just to have a good cry. This disease can get overwhelming, and it seems no one understands it like the parents. Sometimes it is exhausting to day in and day out have a sick child. You are a great mother. God bless. (n, 15, systemic) > RE: Re: Update > > > Thanks for the support and the 504 info.. i remember someone posted a list of things ( patty, perhaps????) to include a few weeks ago. I guess i should look back and re-read that post seeing as it might be a little more relevent now. > > I really appreciate the support right now... its strange, Nick has had this for nearly a year, but today its really hitting home that its real. Im feeling pretty sad tonight. > > hugs Helen, mom to (systemic,6) > > > > > > : > > > > > >------------------------------------------------------------------------------ > There are now three new levels of MSN Hotmail Extra Storage! Learn more. > >------------------------------------------------------------------------------ >

[Guest guest]

n is still a bit under the weather. Headache and her abdomen hurts. I think we will call the rheumy and see if she can be seen. The systemic stuff has always bothered her more than the arthritis. He may say to try to tough it out like he did last year. I am looking for an acupuncturist for her headaches. A ped neurologist recommended that, and last year by the time we starting looking-her headaches went away. How is your little one feeling? (n, 15, systemic)

RE: Re: Update > > > Thanks for the support and the 504 info.. i remember someone posted a list of things ( patty, perhaps????) to include a few weeks ago. I guess i should look back and re-read that post seeing as it might be a little more relevent now. > > I really appreciate the support right now... its strange, Nick has had this for nearly a year, but today its really hitting home that its real. Im feeling pretty sad tonight. > > hugs Helen, mom to (systemic,6) > > > > > > : > > > > > >------------------------------------------------------------------------------ > There are now three new levels of MSN Hotmail Extra Storage! Learn more. > >------------------------------------------------------------------------------ >

[Guest guest]

Hi Patty,

yes I do really like Nicks rhuemy... someone will go in on their day off to see us, is a keeper in my book. She was very cautious in the beginning and I was beginning to question that. But as she said, she was just waiting for more signs of joint involvement. Some Systemic kids can just have the fevers/rashes etc and never delvelop joint problems. She doesnt like to start the DMARDS until she sees for herself the swelling. Its not that she doesnt believe the parents its just her way of doing things I guess and even though Nicks had a lot of joint pain, hes never had swelling ( except a swollen finger last Oct.). She really dislikes giving the kids prednisone and trys to aviod it as much as possible.

Shes always giving me plenty of JRA lit to read. Articles that shes found and will photocopy, booklets for the school. The current issues of Arthritis Today and Kids get Arthritis Too.. etc. Shes also lent me " Raising A Child with Arthritis" its her own personal book to read ( very informative) I also got about 5 different articles on Methotrexate. She keeps me busy with my reading )))

Nick is doing better today... hes a little more perky... he did start running a temp at supper time, but its low grade and I think this will be the last... im sure by tomorrow night the pred will have fully kicked in and he will not get the dreaded temp....

Thanks for your concern....)))) Good luck on Monday, sounds like Caitlyn is raring to get back to see all her friends. I hope all goes well for her, it sounds like you have some great plans in line and everything will go smoothly ))) Tell caitlyn we are happy to hear of her return to school and we hope she has a great day!!!!!!!!

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: Emeraldsx3@... >Reply- > >Subject: Re: Update >Date: Sat, 31 Jan 2004 15:52:27 EST > >In a message dated 1/30/04 9:36:06 PM Eastern Standard Time, >hburger64@... writes: > ><< Nick already has a IEP for speech, can his requirements for the JRA be >added to that??? or do we need a separate plan???? >> >Hi Helen: > >Sorry to hear that Nick still isn't feeling well. > >Sounds like you have yourself one heck of a rheumy. Are you pleased she is >now getting aggressive? > >Caitlin has an IEP in place too. When I called the school and made some >extra requests I thought it would have to go through an IEP Amendment, but they >said they could do it without it. We requested: Extra set of books at home >(got those), more time between each and every class (so she doesn't get whacked >with all those kids in the hallway at the same time - Caitlin is also petite >and let me tell you some of those middle school kids are bigger than I am, and >I'm not that short and by no means tiny LOL, and they are still bigger), no PE >for now, limited writing, half days to start back with and continued home >bound instruction for any help getting completely caught up and for one class that >she will only be in for (half-day) about 15 minutes (but she's ahead in this >class already). They agreed to all of this without any problem or IEP amend. >Maybe your school can do the same. Although the alphasmart might have to be >part of the amendment. > ><< a ton of paperwork to read, a book the docs lending me about raising a >child with arthritis, a ton of scripts we headed over to the hospital for labs.>> > >What type of paperwork? What is the name of the book? I should really go to >the book store and see what they have on children with arthritis. > ><< Nick really does have JRA, i guess a part of me always hoped it would just >go away and not get worse. I was wrong. Reality is hitting home.>> > >Helen what meds has Nick been on before yesterday's appt? Remind me again: >When did he first get sick? How is your little guy today? I hope the meds >kick in ASAP and little Nick is feeling better and more comfortable soon. > >Take care. >Patty There are now three new levels of MSN Hotmail Extra Storage! Learn more.

[Guest guest]

Hi ,

I sorry to read m is still under the weather... Good idea to touch base with her doctor... its soo hard to watch them like this. I hope she gets some relief soon. Has she finshed with all the exams at school now??? has the stress from that eased any???

is doing better today.. he still got a fever at supper time, but its low grade and he seems perky enough. Hes had a headache all week and thats finally gone today, his joints are still sore and hes got one large node in his neck thats still enlarged.

MTX starts tomorrow.... im going to have to wait till about 12.00 and hes to take on an empty tummy so this could be hard. He needs labs drawn 24 hrs later and i cant get him to the docs til lunchtime as my 8th grader has a 2 hour hour ortho appt to have his braces put on monday Am.

I also have conferences for 3 of the boys tomorrow afternoon... a busy day!!! But Nicks conference has come at a great time because i intend to bring up this IEP/504 with his teacher.

Give m a gentle hug from us and tell her i hope she feels better in the am......

hugs Helen, mom to (6,systemic) Find high-speed ‘net deals — comparison-shop your local providers here.

[Guest guest]

...

Thanks for the great ideas.. everyone helps... heres one i just read about and would never had crossed my mind...

Modifications to the fire drill/emergency evac plans....perhaps a child with bad knees/hips/ankles might need extra assistance to get out of the building in the case of an emergency. One to think about.

Hugs Helen, mom to (6,systemic)web site building tool. Try it! Check out the new MSN 9 Dial-up — fast reliable Internet access with prime features!

[Guest guest]

Hi Helen:

She certainly is a keeper. I am jealous, I never get any literature to read.

I always go online. Next time I go, I will have to look at all the

brochures/literature they have there and ask about additional reading.

Caitlin's

doctor told my husband I am one well read/researched mom (and that I read to

much

LOL). My husband swears he is doing research before I come in just in case I

ask some obscure question:) I am confidant he knows his stuff:) Did I tell

you all that the woman I met at my daughter's elementary school and now

correspond with regarding RA also goes to him. Little does he know I get my

information from all of you on this great, invaluable list.

I am thrilled to hear that Nick is doing better and acting a little more

perky. How was his temp last night/today? I hope the prednisone kicks in and

he

is feeling better. Did he get his first dose of MTX? If so, what dose is she

starting him out on?

Thank you for Caitlin's first day back to school well wishes! I will tell

her your well wishes. You're a sweetie.

Hugs to you and Nick. I hope today is a great day for both:)

Take care.

Patty

[Guest guest]

A scary, but good thought Helen. One I hadn't even thought about.

Take care.

Patty

[Guest guest]

In a message dated 1/31/04 2:52:44 PM Central Standard Time, Emeraldsx3@... writes:

Nick already has a IEP for speech, can his requirements for the JRA be added to that??? or do we need a separate plan???? >>

Hi Helen,

I want to add something else.If Nick is receiving speech then when you add the JRA he qualafies for IDEA which is better then a 504 plan.The speech is his special ed criteria and the JRA falls under health impairment and something else.Shoot,I can't think of it.You will most likely need to be present for the IEP.

started out with an IEP at 3 at our local school for speech.Once all the paperwork was completed we had our BIG meeting.Assistant principal,speech,PT,OT,special ed preschool teacher,regular preschool teacher,school psychiatrist and me.My first power meeting,lol.

Good luck

Becki and 5 systemic