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Sue
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Just wondering if anyone made it to the Dynakids conference in Ohio?? Looking for anything new you might have learned?? Please let us know.

Sue

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Hi Sue,

I went to the conference. Three physicians gave talks. I, personally, can't say I learned much that was new for me (though I read a lot). I did learn a bit more about octreotide after listening to Dr. Hoeldtke's lecture. They did tape record the lectures and will be selling videotapes in the future.

It was great to see how happy the youth were to be with each other. Even though they weren't always feeling well, they all seemed to have a great time. I met a couple of girls that I really liked...one named Jessica and another named Lillian. If you guys are out there, it was wonderful to meet you (and your moms too). I also met some other youth that frequent this forum...luckygoat was one of them. I've met her and her mom before...they are very nice people.

I also met Lorrell from our group. We had some laughs...she is a very nice person. Julie was there with her husband, too. I've known them for years, and it was great to get together with them again.

Michelle

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Hi Sue,

Camp was great and I learned a lot from the lectures. My husband appreciated hearing the doctor's speak too. It was nice to see the kids at camp smiling, laughing and feeling safe. It was a very up-beat time. I felt comfortable too.

For me, it was rather therapuetic....I didn't feel 'broken'....I felt 'okay,' and able to even answer, "Yes I am a person with POTS." I have never said those words before...so it was a good thing!

I met lots of interesting people and some of the kids at camp. I met a young girl who is studying to be a teacher (19 years old). Her mother introduced us and it was nice because I am a teacher too.

I met Michelle which was fun! We shared some laughs...it was a great experience...I hope to meet you at camp next year!

I was glad to read that the Cerefolin has been helping you too!!

I also hope you father-in-law is doing better.

Lorrell

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I was there too!! Hey nobody met me!! I feel left out!! :P That's okay. Does anyone know who the lady was that helped Wednesday night when a girl went down in the activity room during the start of the movie? I was with her and I didn't catch her name, but she seemed like she'd been dealing with it for a while and like she knew a lot. She had dark hair to her shoulders or so. Also my dad talked to Michelle about how she does stuff for adults like the DYNA thing. He was the bald guy with glasses, 6 foot tall.

I'm the 21 year old that most people thought was 16. From Virginia. My dad got my mom to get Michelle's phone number or something. I was the one who went down outside during the parents' picture at the picnic on Wednesday.

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Wish I could have met you, UnicornIsis. There were so many people there, and I had no clue which ones frequent our forum (besides the ones I'd met before). I do remember your parents, and I remember your mom coming up to our table and talking with me. I only went to the the main events, so I have no clue who the woman at the hotel was. I only live an hour from Toledo so I drove back and forth each day.

I do know what you look like because I remember you fainting after the parents pic. I was wearing a black print sun dress that day. You were the one they picked up off the grass and moved to the walkway, yes? (You might not remember this...you looked pretty out of it at the time). Hope you're feeling better now!

Michelle

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Michelle, yes I was the one they moved off the grass. I'm awake when I get the shakes, but it's hard to move or do or think or say much of anything. I had my eyes closed and couldn't feel much, but I knew people were lifting me up. I'm sorry I didn't recognize you at the picnic, I was having a bad time the whole time and I don't remember much of anybody or anything from that part. I was started shaking right before everybody lined up for the pic, I sat down in the front for our pic, but I knew it wouldn't make any difference if I waited till the pic was done for people to know I was having a spell, so I didn't say anything till it was over. You can't do anything for it and if you try to stop it or hold me still it just makes it worse. I just have to ride it out. So I figured it was better to get the parents pic and then let everybody freak out. I think the parents (and spouses I guess too) freak out more than us kids do when it happens to us.

I agree there were a LOT of people there, Debbie said there 50 or 55 families just staying at the hotel. I'm just sad I didn't get to meet more people. It makes it much better for me when I can put a face to a name and a personality I already know. Less of brain fog that way.

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Lorrell,

I'm almost sure that I am the 19 year old education major that you met at the Summer Chill. :) I think that you and your husband were sitting at a table with my mom who introduced us. I'm sorry that I didn't make the connection that you were from Dinet! I'm glad that you were able to come to the lecture. Although DYNA is primarily kids, it's neat to see adults getting involved as well!

Hope all is well!

~ Meghan :)

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Hi Meghan!

Yes, I met you! I was impressed with you postive attitude and the fact that you are studying to be a TEACHER. Always remember, (and I remind the doctors :) ) that teachers are the beginning of all other professions! We need the brightest and the best as educators so ...you go girl!

We were sitting with your mother and had a great time talking with her. In fact the new pastor at your church WAS the pastor at my kids church in Lexington, Kentucky! Small world :)

Please tell you mom that Steve and Karen said, 'hello!'

Karen 'Lorrell' (I started posting with my middle name so I have to continue...never posted before so wasn't sure how to go about it!!)

Hope the trip didn't wear you out too much...it was a great camp and it was the first time that I felt 'okay.' I hope you had a great time too.

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I am so glad you all enjoyed yourselves! Michelle - you are a wonderful person and it was great to finally meet you. I hope your DINET adults value you as much as I do! We are all very blessed that you take the time out of your busy schedule to get all this information out to the public and to keep DINET up and running. Someday, I would like to meet you when I am not overwhelmed with picking up kids off the grass or floors!

A funny thing happened that you adults will appreciate. Through the kindness of a contact we have - a medical life flight helicopter landed at the hotel to give the kids a tour. When I had my back turned, someone took the kids outside to watch it land. Standing out in the heat and waiting for the chopper to land and looking up into the sky was too much for the kids though. As soon as I realized they were outside (ugh - it was way too hot) I ran out to tell them all to get back inside to wait. No sooner had I walked back in the door than one of the kids was having a seizure on the hotel floor. The medics were to her within two minutes though. Of course, technically the medics landing caused it! I heard one of the medics telling their boss on the phone that things sure got crazy once they landed (we had more than one child down by this time and we had them laying on the floor with their feet elevated in the hotel hallway). The kids all regrouped though and it all worked out fine. They also all know NOT to go out in the heat and stand in one place and look up at the sky now! Believe me...there is also no doubt that the Toledo Life-Flight Medics KNOW that dysautonomia is real. They got an eye full. The kids gave me a few more gray hairs this year too! It's all worth it to see the smiles on their faces though. They had a great time. They are so awesome and I am so proud of them all!

I hope to always work closely with Michelle. Our organizations are proof that the young and the old (OK...now I am not saying you guys are old - you know what I mean) can work really well together!

Please remember to donate to DINET - every little bit helps Michelle keep putting out the information that we all value so much.

Debbie www.dynakids.org ;)

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