Guest guest Posted July 27, 1999 Report Share Posted July 27, 1999 Hi Everyone, Well, after a conference like that I could no longer stay off the list. It was so awesome to meet all of you guys. It was so exciting for me.I want to say so much but will make this brief. Two quick things..... First........I have always signed after Jillian's name cHaRgE..... now that Kirk , endoctrinoligist looked at Jillian at the conference and said she has a " little wee wee " , do I need to capitalize the " G " now???? What do you think ???? Second..........Did anyone else get a sad feeling after leaving the conference? When I was in bed my first night home I felt sad and I pinpointed the reason at the moment for being that I felt so comfortable with all the babies in Jillian's age group at the conference because it didn't matter that she was 16 months old and not walking but hopping like a frog because they all had their own unique way to get around and although it was all different, it was all " normal " for our kids, now she returns to go to rooms full of kids her age, walking and crawling normal and she's the " different " one again... I really liked her with her CHARGE friends. I realize she feels no different, but it's for me knowing that the parents also feel she's not different!! Okay, that's as brief as it gets.Love you guys!!! Glad to be back!!!! Foley Mom to (4 next month), (CHARGE guy in heaven , would have been 3 in Sept.) and Jillian 16 month old cHaR(g?G)E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 1999 Report Share Posted July 27, 1999 , It was great to meet you and Jillian at the conference. I'm so glad your back on the list. As far as capitalizing the *G*, I would say go ahead until you think otherwise. I was impressed with Dr. Kirk. I missed his session in Boston. I don't know if the Mom who's son broke 's glasses is on the list, but if anyone remembers who she is, tell her that his glasses were easily repaired! Janet wife to Matt Mom to & (CHaRGEr) 7, and nne 2 - otherwise know as *screech* to those who had the pleasure to eat lunch near us! and Mom to 22 months (leaving on 8/13) and 1. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 , Welcome back to the list. I have really missed you! BTW, Destiny has also been noted to have small " female organs, " yet I do not " G " the " g " since it does not affect her physically or medically. Also, it is a more subjective diagnosis. If it ever becomes an issue, or if she starts having kidney or urinary problems, I will capitalize it then. So for now Destiny is still CHARgE. To all my Charge friends: We had a BLAST at the Conference. It was wonderful to meet all the new faces and even nicer to see our old friends again. All of the organizers did a superb job of putting the conference together. Every year I see changes and improvements from things learned in the past. It's hard to believe perfection can be improved upon, but somehow you guys do it! Thank you for all your efforts. I can't wait to see you again in 2 years. I cannot believe we have to wait that long before our next " family " reunion. Until then this wonderful list serv will have to do. I can't say which I enjoyed more--the speakers or the families. I learn so much from both that I can take home and use right away. Like you , I do not feel so alone anymore and now I can take that home with me. I really like this list serv in that way. 2 years ago, I went home and was isolated once again. Now, in a very real sense you are still w/ me (thank you Casey!). Besides taking all of you (children, parents and professionals) w/ me in my heart, I came away w/ 2 important things: 1) Destiny is now swallowing safe enough to drink liquids other than water and 2) Ways to integrate her w/ her regular peers other than a school setting where she is already happy. The swallowing part is easy. I JUST learned my 6 year old Destiny LOVES milk. She drinks it several times a day. I have to actually tell her she's had enough. Also, we immediately cut out one of her tube feedings and she drinks a can of Pediasure orally in the morning (it takes all morning, but she's doing it!). Thank you all for everything--here and at each Conference. All of you are my family both in a literal and figurative sense. All of the Chargers look so much alike they could be siblings and we have all been through so much together that only other Chargers could understand. Figurative because we follow each others' lives, cry at the disappointments and cheer w/ each success. Thank you all for being my family. (Destiny 6 1/2 CHARgE, Zachary 4) NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 , It was great meeting you and Jillian, too. I'm glad you're back on the list, I enjoyed sitting with you & Michele in the 0-3 breakouts! If Dr.Kirk says she's got a small wee wee, I wouldn't think you'd have to worry about it too much, but I'd go ahead and capitalize that " G " . We went out shopping on Fri. night with Kim Blake and Dr. Kirk {Jeanie and I} and I apologized jokingly to him about us interrupting the big " penis chat " .... He got a kick out of that one I think... Here's to a great conference... Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: JFoley6163@... > >Hi Everyone, > >Well, after a conference like that I could no longer stay off the list. It >was so awesome to meet all of you guys. It was so exciting for me.I want to >say so much but will make this brief. Two quick things..... > >First........I have always signed after Jillian's name cHaRgE..... now that > Kirk , endoctrinoligist looked at Jillian at the conference and said >she has a " little wee wee " , do I need to capitalize the " G " now???? What do >you think ???? > >Second..........Did anyone else get a sad feeling after leaving the >conference? When I was in bed my first night home I felt sad and I pinpointed >the reason at the moment for being that I felt so comfortable with all the >babies in Jillian's age group at the conference because it didn't matter that >she was 16 months old and not walking but hopping like a frog because they >all had their own unique way to get around and although it was all different, >it was all " normal " for our kids, now she returns to go to rooms full of kids >her age, walking and crawling normal and she's the " different " one again... I >really liked her with her CHARGE friends. I realize she feels no different, >but it's for me knowing that the parents also feel she's not different!! > >Okay, that's as brief as it gets.Love you guys!!! Glad to be back!!!! > > Foley >Mom to (4 next month), (CHARGE guy in heaven , would have been >3 in Sept.) and Jillian 16 month old cHaR(g?G)E >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 , I'm so pleased you are back on the list. We've missed you!!!! I'm glad everyone enjoyed the conference and I can't wait to hear all about it. Hopefully we'll make it to the 2001 conference!!!! Elaine mum to Elise(7yrs) & Jack(2yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 Hi , glad to know you and Jillian made it home safely. I have been wondering how everyone made out on the return trip. It was great to meet Jillian and you and hope we will continue to keep in touch. We have a new parent group that is just getting up and running. I do hope you will consider being a part of it. I am in the process of doing the paperwork for your reimbursement and realized that you paid your own registration also(?). If you send me your original receipt I can include that. Just to let you know it takes the university 4-6 weeks to get a check to you. Please call if you have questions or if we can be of further help. Take care. 1-. Gwen JFoley6163@... wrote: > From: JFoley6163@... > > Hi Everyone, > > Well, after a conference like that I could no longer stay off the list. It > was so awesome to meet all of you guys. It was so exciting for me.I want to > say so much but will make this brief. Two quick things..... > > First........I have always signed after Jillian's name cHaRgE..... now that > Kirk , endoctrinoligist looked at Jillian at the conference and said > she has a " little wee wee " , do I need to capitalize the " G " now???? What do > you think ???? > > Second..........Did anyone else get a sad feeling after leaving the > conference? When I was in bed my first night home I felt sad and I pinpointed > the reason at the moment for being that I felt so comfortable with all the > babies in Jillian's age group at the conference because it didn't matter that > she was 16 months old and not walking but hopping like a frog because they > all had their own unique way to get around and although it was all different, > it was all " normal " for our kids, now she returns to go to rooms full of kids > her age, walking and crawling normal and she's the " different " one again... I > really liked her with her CHARGE friends. I realize she feels no different, > but it's for me knowing that the parents also feel she's not different!! > > Okay, that's as brief as it gets.Love you guys!!! Glad to be back!!!! > > Foley > Mom to (4 next month), (CHARGE guy in heaven , would have been > 3 in Sept.) and Jillian 16 month old cHaR(g?G)E > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 1999 Report Share Posted July 28, 1999 In a message dated 99-07-28 13:29:12 EDT, you write: << I am in the process of doing the paperwork for your reimbursement and realized that you paid your own registration also(?). If you send me your original receipt I can include that. Just to let you know it takes the university 4-6 weeks >> Gwen, I don't have a receipt for my registration. I would imagine n or Brownie or someone else can handle that????? n, you out there??? How do i get a receipt?? Also, Gwen, I just got my pictures back and will send you the one of you with Jillian. Foley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 kAREN, WHO DID YOU GET TO PAY YOUR REGISTRATION ETC? Thanks, Barbra M. P>S> it was nice meeting you. You are very pretty! :-) Quote Link to comment Share on other sites More sharing options...
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