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CWD Friends for Life 2009 Conference Chat - May 29, 2009
Moderator (server) Fri May 29 08:00:00 PM EDT 2009
Our chat about CWD's Friends for Life 2009 conference starts at 9pm Eastern.
Our chat about CWD's Friends for Life 2009 conference starts in 10 min in the 'Friends for Life' room.
anyone here yet?
Hi Michelle
I was just about to send out a welcome to the Friends for Life chat. How are you tonight?
I'm here!
I'm good! how are you?? with just over a month
Hiya Carol!
Michelle, are you making family cards?
Hey Carol - How are you!
Am I the only one not making a quilt?
Hi Laura!
Who is on with us? Please say hello!
good evening
Carol...no to cards...yes to quilt - I just have to do it.
I made it!
There's still time - Jeff has blank quilt squares at his house.
hello
Hey Rhon - Did you like my 15 minute warning?
I did.
I wonder if he has white ones. I contacted his mom a while back and she only had pink.
I just have to make ours. it will only take a day or two - I'm a quick quilter. I just have to do it. 3+ years and I can't do it.
So - we're about 5 weeks away from the conference... everyone's kids are excited?
the quilt is my one diabetes stumbling block.
I have a white one.
Michelle, you can tell me how to sew a simple white quilt?
my kids are nuts about it!
Michelle - Why? Emotional?
The Quilt is so amazing when it is all up at once. I was just reviewing photos from the last couple of times we showed it in Washington, D.C. - very powerful.
I think so Laura. I'm not really sure - I'm good with diabetes - I really am - but the quilt...gets to me.
We've already printed out the schedules & highlighted it.
hello
why the tears Sora?
Hi
hard to believe only 5 weeks away
Laura, may I add a friend to registration when he knows he can get off from work? Sors r u ok?
Carol, I have an extra white quilt square from Jeff.
I can understand that. And you are trying to portray your daughter - and the things that are important to you - in a 3x3 square. That's challenging.
hi ellen
hey Ellen.
Laura, If I signed up my husband and I for the first focus group and he may have to watch the kids. Do I just tell them when we get there that he will not attend that one? It is one that is full too.
Hi Sora, Hi Ellen
Yes, fine to add an extra person to your registration when you know.
Hello, first timers. We're really excited. Hard to find other kids Hayden's age with T1D here in rural Missouri.
thanks
The quilts all together certainly make a powerful statement. What's wonderful is that you can make it as detailed or simple as you like. It reflects who your child is, of course, not just a child with diabetes.
R, Jeff had white squares? Hmmm, how much are they and how do I get one. I have a Pfaff sewing machine, you would think I could sew one.
Carol - Please email me with that info when you know for sure. It will open a spot for someone else. The focus groups do tend to get full. However, there are always no-shows, so if there is a group that you really want to attend, and it says 'full,' go to the door at the beginning anyway and see if there is a spot for you.
Paula are you going to be at FFL?
kellie k you will enjoy it
Yep Ellen :)
I've missed chatting this year
Hello all
Carol, you can e mail me your mailing address & I will just mail it to you. I've had it for a while.
While I can't say that there are hundreds of people from Missouri attending, I CAN say that there are hundreds of first-timers... and hundreds of teens, and hundreds of tweens, and hundreds of elementary, and hundreds of husbands... even hundreds of grandparents this year!
How do you handle all the swimming while pumping? We're Minimed, thinking about doing Lantus and only bolusing w/pump for meals because he'll be in the pool so much.
Hi Kim - How are you tonight?
That's so awesome Laura! What's the total so far?
Yes, Laura.......my mom is coming a 77 year old grandma :)
Hi Kim
Kellie, you will see lots and lots of pumpers in the pool at Disney, and you'll hear lots of tips. I remember our very first FFL, I actually had to wrap Sam's belly in duct tape to keep his infusion set in. That was 10 years ago. We don't do duct tape anymore!
There are plenty of grandparent sessions, too. :)
Paula - That is GREAT! I love that the grandparents are getting so involved. She will have such a good time and learn so much. And make so many friends.
this will be our first FFL very excited to come!
R, How do I email you? I can PM it to you if I knew your sign on name
We will definitely hit the 3,000 person mark this year. We're about 10% ahead of last year, but I think it will slow down a bit in the next couple of weeks.
Yes R, my mom is excited
That's funny Laura
What day is everyone arriving?
bobrhond@yahoo.com
Kim everyone is helpful and friendly
that is great to hear...my daughter has never been around other kids with T1 and is so looking forward to making new friends
we don't arrive till early wed morning.
Lots of volunteers this year, too. Almost all the slots are full. Still have some space for room helpers if anyone wants to do that.
We are getting there Tuesday.
Bob is just now allowed to put in for leave or TDY, so I'm not sure the exact time, but it should be Tuesday.
of the 3000 people, do you know how many are type 1 kids?
I will get our registration form in! Thankfully the hotel is booked.
We're coming in on the 7th
Laura refresh my memory do we have to buy the tickets for family day separately? for teen day separately? Hi Stacey
Kim, I think that is one of the best things... being surrounded by all of these other wonderful families who have type 1. Parents, grandparents, brothers and sisters, kids with type 1 of all ages - and some absolutely great role models (including the college age kids with type 1 who are now staff).
Carol - will probably be about 800 or so with type 1. And another couple hundred with type 2.
Hello Laura and everyone. Greetings from CA. How is everyone doing. We are arriving on 7/03 @ 6am.
Hi Paula
The 1 of the great things I enjoy seeing, the kids who are now "grown" & still come.
Hey Stacey
My daughter is a sibling and has THE BEST time there. She has even brought a friend who wants to be a nurse and now they both have friends with diabetes thanks to FFL.
Betty, you could see Disney 4th of July fireworks. Cool!
Park tickets for Saturday, yes you need to buy them. The tickets that are on the registration form are for the character breakfast at the hotel on SAturday morning (and include a chartered bus over to MK, but not the park tickets themselves). The teen day park tickets are covered. Lunch is covered as well. Teens just need pocket money.
Wow 800!
Hey Miss Betty! Hey Momma Bagel!
Hi Rhonda, yes it will also be Diamonds dx'd date, right?
Yes... and many, many families who have 2+ people with type 1.
hi carol s
hi everyone else I missed
What is the best way to hook up with mom's of a similar age group?
Almost. Dx was 7/5. July is a very popular month in our house.
Laura, do you have me getting a D bracelet?
Could I ask anyone with expired glucagons to bring it to FFl so I can have it to train the school?
Hi everyone.
Laura - mirrors are taken care of . Scott has 3 at the store... and another company should be sending 9... I'll email you ..
The e mail list.
The best way to hook up is to send a note to the Orlando2009@childrenwithdiabetes mailing list, and say "I'm a mom of a _______ and would like to meet other moms by the pool at 1:00 on Tuesday" (or whatever). Please email me if you want to get together.
That's what the list is for, but Momma Bagel and I are the only ones who use it.
Hello everyone too
hi dana
Rhon, too. I stand corrected.
Carol S, they usually give out glucagon training kits n the exhibit hall, I think its the ADA who has them.
How come everyone has a first name... and I'm always mommabagel???
Hi. I guess my daughter and I are one of the families with 2 type 1's!
I LOVE to communicate.
carol, I have a ton - I'll pm you.
Thanks Betty!, What is in the training kit? A dummy syringe and instructions?
Because you ARE MommaBagel. And I love it! That's how I refer to you here (yes we talk about you).
except in return...you know what I want LOL.
What does everyone do with their pumps when they go to the disney waterparks?
I sent an email to the list.. Check you airline flight prices.. The prices have come down a great deal since the end of March... Most airlines will give a credit for the differnce.
Stacey - That is GREAT! Give Scott a smooch from me and say thank you.
What this means is that the teenage girls will have a makeup session together prior to the dance on Friday. Stacey's family is donating mirrors, the girls will bring their makeup, Anna Hewitt (Jay Hewitt's wife, former Miss South Carolina) will be on hand for makeup tips... very fun.
Thanks, Michelle!
to anyone who has bought tickets before whats the best way to do it if you dont want to carry a 2nd mortgage on your house?
Oh wow Laura. She's really pretty, too.
cool Laura and Stacey! my teen will be all over that...
Paula, can you get military tix?? those are the cheapest.
Glucagon dummy kit, CD & Handbook for School personnel, or you can download Handbook at ADA website. We use it every time. We have a 504 Plan meeting next week.
It will be fun for the teens. They love to do makeup anyway - this gives them some common space, time, and a 'professional' to help them do it. I'll send a note to the email list as soon as I nail down a room for it. Monday.
Sounds nice Betty, We don't have a 504 , we are at a private school.
Paula - If you are just going for Saturday, there aren't a lot of discounts. The more days you buy, the less expensive it is per day - but it's overall very expensive (does that make sense?). There is a link on the conference website that offers discounted tickets, but only if you are going for more than one day.
gee, can grown ups get a overhaul too?
i have to log off...see you all ...in a month or so.....
If anyone has a child who will be in childcare, please make sure to fill out the medical information sheet. Jeff just posted that online today.
Not sure if Diamond will dig it or not. I'll ask her. We don't let her wear make up yet, except for special occassions. I think this would qualify.
Hey Laura, I'm sorry I have to ask again, what color are the shirts this year? I have to coordinate my wardrobe
R - same here with my daughter...she will be so excited.
We grownups can descend upon the room when the teens are done... but gee, do you think it will help? I have some 20 year old wrinkles...
Nite Michelle.
bye Michelle
Thanks Laura Richard and his buddy wanted to go to Animal Kingdom on Wed trying to figure out the cheapest way to do all this night michelle
The shirts are sort of a peach/cantaloupe orange color with white print. Not bright bright lollipop orange. We may have a few Insulin Is Not A Cure shirts, but not a lot like in previous years. Just what is in stock. We WILL have - drum roll please - CWD ponchos! So we can recognize each other in the downpours in the park!
YEA PONCHOS!
We found that when we buy tickets for three days it was cheaper than just for two.
are the poncho's PURPLE???????
Sorry for being late. I'm sure I missed a lot.
fun ponchos great idea
Where will the ponchos be sold and how much?
Does it normally "downpour" in Orlando in July?
hi brenda
hi brenda
Yeah Ponchos. I always forget to bring them, and now I can get new ones
Like someone else said. Our husbands will look sassy in those shirts
Dana, you can count on it almost every day.
Yuk!
CWD Ponchos - a new fashion statement
Just remember to leave LOTS of room in your luggage for the ponchos and other goodies OR bring an empty tote bag or such.
Yes, a little rain everyday to make it humid. Bring your flat irons.
FL has brief "showers", but sometimes they are painful downpours. It's not often or a lot, but there's no notice.
Dana, my favorite thing is to be in the cold a.c., then step out into the humidity. My glasses steam up every time.
Ponchos are sort of a see-through dark blue with white CWD logo and smileys. $5 each (just covers our cost).
where will you be selling them??
Just a reminder to wear your CWD pins from all the years, are we selling pins this year Brenda?
We got DRENCHED coming from the pool to the main building with the tweens year before last & out of all the adults, ONE had a poncho.
Personally, I think each room should come with a clothes dryer instead of a fridge...
Anything else we should bring that I might not have thought of?
I missed out on the pins last year
I only know about pins from previous years because they are stored here. I assume there will be new ones.
Old pins will be at registration.
Yea. I lost 1 of mine last year & will have to replace it.
that design sounds groooooooovey
Rhon - I remember that. It's why we aren't doing pool time anymore. Those storms come up so quickly. It was a little dangerous getting everyone out of the water and under shelter (or not) in such a short amount of time. We'll skip that part this year.
We're a groovy bunch.
Yes, there are new pins this year. Please remind Jeff to check on them?
That doesn't hurt my fee any. The kids will get pool time with their parents.
I agree Laura. And don't go directly from the pool to the restaurants or you will freeze your fannies off
I thought there was one part on the schedule for kids that they are going to the pool during our session? Is that not on the schedule anymore?
*my feelings*
Well, just remember that if you forget anything diabetes-wise, someone else has extra. And if you forget something like toiletries or clothing, you are in the middle of Orlando civilization and you can buy anything.
Don't try wearing EVERY pin like this:
http://www.childrenwithdiabetes.com/activities/Orlando2007/i/20070712_0396MR_BrendaBadge_800.jpg
Way too heavy and that was 2007!
That is fine with me too. We'll be at the pool with the anyway.
i wear all my pins.. but inside the plastic...
Nope - no pool time at FFL. Make sure you are looking at the 2009 schedule. Some people have sent me questions and they were clearly looking at 2007 and 2008 schedules. Brenda - would you please link to the 2009 schedule for the kids?
Brenda, that's not even all of them, is it?
I wear them all too - and some others give me as well as DRI pins - I don't even get the new admission tag because I don't want to take the tags out.
at the pool there should be two sections those with cellulite and those without.....I know where i'll be
Do I need to pay for loaner back up pumps for my daughter and I then? Or if one of ours breaks will there be plenty on hand?
Brenda - Do you know if there are leftover sibling pins from last year?
You pump company should have loaner pumps. Animas is free.
jesse's siblings really liked those
Laura... can we still get tickets for the family banquet dinner thursday night??
I'm assuming we have leftover sibling pins.
http://www.childrenwithdiabetes.com/activities/orlando2009/YouthSchedule.htm
All of the pump companies will be there, so if your pump breaks, they will be able to connect you with a clinical person who can arrange whatever needs to happen. The pump companies don't general come with a bin full of loaners 'just in case' - but they have been very helpful in past years to people who need backups. (and I know from personal experience!)
Dana, what brand of pump do you have?
Sibling pins were so cool. I have a great picture of Jeremy getting his pin from Tom Karlya
I will run to the upstairs "office" and check. BRB
Both of us use minimed. $50 each loaner for the week
Yes, you can still get tickets. Email me. YOu will not be able to get them on site.
good question cathy, i need to get one for richard's friend
Dana, Yikes, ours was free.
thanks
Minimed charges for a loaner?? thats weird..
boy i didnt even know there were loaner pumps great idea
Cozmo used to be free then they started charging, now they don't even do vacation loaners
Perhaps that cuz we are in Canada?!?!?
Reminder about Weds - the grand opening reception is at 6 and there is a lot of food. Don't eat dinner first.
It's hard to keep on here sometimes. Laura, if you responded already, sorry, I missed it. But do you have me down for a D bracelet?
There are a lot of talented people who attend FFL - is it possible to get some to write songs - like camp songs, or theme songs - we can sing each together?
I'm sure George can.
What's a D bracelet (sorry I am a first timer!)
Oh, when you register, everybody wears a different colored bracelet. 1 for Diabetes, 1 for celiac, 1 for sibling
So somebody with diabetes can be recognized if need be.
Hi Rhon - I don't keep a list of who gets a green bracelet and orange one. If you have Diabetes (or something like hypoglycemia), you get a green bracelet. If you need gluten free food, you get a yellow bracelet (and your own special uncontaminated buffet!). All other folks get orange bracelets so that we know you are with our group and we let you eat at the CWD buffets!
Green if you have diabetes, orange for siblings, yellow for celiac.
I have at least 30 sibling pins here.
Dana ask away I wore Laura out with questions
OK, thanks!
has Mike ordered the desserts yet?? specifically CHOCOLATE???
That's why we have these chat sessions.
George is going to be busy flying his plane across Canada raising money for diabetes research. I think he gets back a day or two before flying to Orlando for FFL.
My son is peanut allergic. I know the conference is peanut free but do I need to talk to anyone before we go?
Hopefully I don't become the nut police again like last year. I felt awful.
Oooh, I made some chocolate covered strawberries the other day. They were goo, but nearly as pretty as the FFL ones Laura always gets.
er, good, not goo
These are tyvek bracelets, and everyone in our group - adults too - wears one. This is how we keep track of who belongs with us. Disney's Coronado Springs has about 2,000 or so rooms. We have half of them. So that means that the other half of the people at the Resort are not part of Friends for Life. We need to know who is part of us - so everyone gets a tyvek bracelet. :) If it gets icky or worn out, come back to the registration desk and get another.
Carol, Mike the food dude, takes care of all that.
Oh oh My husband asked me to marry him with chocolate covered strawberries!! Watch out everyone! i love them and so do my kids!
Remember the FFL ones have a lot of carbs! We questioned the carb count until we found out that before they dip them in chocolate, they dip them in sugar!
When do I need to talk to Mike?
Hi Laura, hi Brenda, hi Rhon...better late than never!
Every time we get on this chat someone brings up chocolate, NOW I WANT CHOCOLATE
Now I am hungry too. Have to go have a snack.
Carol - Mike is very aware of the peanut allergies. The entire conference is nut free. There are a lot of people with nut allergies, kids and adults alike. Now - having just told you that there are 1000 rooms with other people in them - those folks might have nuts. So, be vigilant and have whatever treatment you use to treat the allergic reaction handy with you all the time. Just like you would glucagon.
Mike spends most of the year preparing the food plans for the conference. He does a great job! He knows no nuts & he has them separate the gluten free already.
hi teresa
Hi Teresa!
GASP! I was on the phone calling in some refills. My statin is fine, but Marissa's NovoLog Rx expired a month ago. She's going to the dr. tomorrow so I guess we're lucky that she'll be able to take care of this.
I'm gonna have a sf chocolate klondike in a sec!
Those bracelets don' wear out very quick! My kids will wear theirs until after we get home as long as 3 weeks until I threaten to take them off
ellen do you remember us talking about having a time for chatters to meet at the conference?
Anyone can email Mike with dietary questions. mike@childrenwithdiabetes.com Just don't email him until after Tuesday... his daughter graduates high school this weekend and they have family in town. You'll get his full attention on Weds.
Brenda, what Dr works on Saturday??
Same here Betty
Goodness Brenda. It's good that you checked!
Hi Paula. :)
I wear mine for a few days after getting home, too, Betty! But eventually it gets so disgusting that I have to take it off. Blech.
Marissa sees a Dr. Mike Heile (see http://www.childrenwithdiabetes.com/activities/orlando2009/faculty.htm). He's coming to FFL this year. He's had D. for several years and is not an endo.
Paula, all at once last year, 1/2 the chatters that were at FFL found me. LOL Somebody even took a pic. It was nice to have the faces for the names.
Once in a blue moon, the hotel will mess up and send out something like granola bars that have nuts. If that happens and you see it, please get Mike, Jeff, or me right away and we'll take care of it. Dietary staff work very very hard to make sure all of our kids are safe, but occasionally stuff does get through. That's why we have to watch.
Tim tried to keep his own for many days a couple of years ago and his darling sister (not mentioning which one, but she's about to graduate from college
Paula, more than a year ago?
Why don't you chatters set up a time to meet poolside on Weds morning? Or Weds after the first timers reception and before the grand opening?
thats a good idea laura thanks
Or for lunch on Weds? At Pepper Market!
I had to go to the kitchen to get my cookies,someone made me want chocolate.
Morning poolside is better since you may get those storms in the afternoon.
They tried to last year & the military families were going to meet ahead of time, too, but it didn't work out.
After would be better if you plan to attend focus groups.
Marissa is graduating already? I can't believe it. I am so happy for her!
Don't forget to get your steps pedometer right away, so you can start counting!
Where will the bulletin board be if we want to post something about chatter's chat?
Actually, Pepper Market in the afternoon is pretty 'down time' for them. Grab a cappuccino, a goodie (something chocolate) and sit and talk. And then you're out of the potential rain.
There will be a bulletin board right by registration. Although, I suggest you set up a time now and send it to the FFL mailing list. Or set up a couple times.
Last year it was up by registration.
Ellen, I don't know how Laura feels about that for this year. Last year, one or two people wrote legit things. Mostly kids left goofy notes.
Or we could meet at one of the laundry buildings towards the end of the conference - you can usually find me there
Also - there is a new outdoor bar - like a margarita bar - just outside the main building by the lake. If you want to have a gathering one evening, that is a perfect place as well. The exhibit hall closes at 9.
That's my fav. thing about the Coronado. Just need to pack quarters and singles.
I hope we don't have to use the bulletin board this year for a lost cell phone! Grrrr....
Hey Laura, is there going to be a get together for those who are musicians, like we did last year after the pool with Nikki Lang?
That's a great idea Laura
I'll bring the oxy clean :)
I know times almost up, but I just remembered. Don't forget your cards with your name & e mail & stuff to hand out to new friends.
We'll have a message board, but we really only want legit messages there. If that doesn't happen, we'll just put it away.
Teresa, our son lost his phone on the Incredible Hulk ride at Universal on Fri. Gluing it to him this time.
jesse broke his cell 2 years ago... scott had to run out and get a new one..
ha ha brenda
Betty - you remember Anton from Russia? He is coming back - likely with his guitar - and a group from Lithuania. That musical gathering was impromptu and wonderful - I don't think you can plan a thing like that. It happens magically. We'll see!
bye
Brenda - I have some duct tape you can borrow...
bye
let me know which brand of glue you use will ya
Bye Carol.
Good idea Laura.
Looking forward to meeting you all! bye
We never found Katey's phone last year. I'm gonna glue it to her fanny this year.
Pam L. making a signature quilt???
Wow - 10 already! Thanks for chatting everyone! We'll have one more towards the end of June. G'night!
bye cathy
bye everyone thanks laura
How old is Katey? Our phone loser is now 15.
Goodnight Laura and everyone.
Nite everybody. It's Klondike time!
Thanks Laura. I remember Anton. Shelby wants to bring her guitar, but all the way from CA with all the other stuff, i just don't know. She is playing so well and performed a duet at the talent show at school.
Can't wait. Paula, we have to MEET and chat. How's Richard doing?
What would you do for a Klondike bar?
CWD FFL Rocks! I am getting goosebumps just remembering all the good times and looking forward to making new memories. This support is wonderful!
Thanks, Betty. Looking forward to seeing you. Soon!
Talk to you all next month or in Orlando!
Night Laura and Brenda and All. We will talk and See you all soon!
Sorry I missed the chat! Too much going on right now.
Looking forward to seeing everyone in FL. Can't wait!!!!
yes I am making the quilt!
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Last Updated: Saturday May 30, 2009 10:51:27
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