Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 You won't have any problem figuring out who I am Carmen. I will be the real tall woman, shouting " ADAM!! ADAM!! ADAM!!! " Everyone knows his name within 2 minutes of us going anywhere.Guarenteed if I finally arrive after driving there, that's the first word you'll hear when we walk into the hotel " Adam! Come back here " and everyone can say " OH Debby has arrived!!!!!!!!! " LOL On a serious note, name tags??? I know they sound horrible, but if I do remember the child's name, I'll surely forget mom;s and visa versa. Debby > Hi all! > I was just thinking we should have some kind of get together for List members at the convention. (Some way to figure out who everyone is) Well, Like you'll know who I am once you hear I'm Storm's mom, but he has an unusual name. I don't know just thinking on (well, not paper but on computer). > Carmen > PS Storm was weighed at the peds office and officially has gained 2.5 pounds since March 16th. > We are pretty excited about it! That's why Dr. H upped his meds, just to match his weight gain. > We FINALLY passed 27 pounds after almost a year!!!!!!!!!!!!!!!!!!!!!!!!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Hi Judith, You could split up. Your husband could stay home with the kids and you could go. Also, you would not have to be there the whole 4 days. You could arrive late Thursday night (or very very early Friday morning), and leave Saturday afternoon. Also, the RSS session will be video taped. So you could just stay home and get the video but then you would not have a chance to meet any one. I hope this helps. Ken M > I am looking for some opinions. Our son (15 mo 10 lb 14 oz > RSS) was diagnosed this year with RSS. This would be our first > convention. We cannot decide whether or not to attend. First of > all, if we leave (and his twin sister ) home, we are > concerned that he will not eat for 4 days. Although their nanny will > be with them during the day Thursday and Friday, that still leaves 2 > nights and the weekend where people who don't usually take care of > the children will be watching them. just doesn't eat as well > for other people. > > Second are the logistics in bringing two 15 month olds - diapers, > baby food for , etc. > > Third, we are already patients of Dr. H. We saw her for the first > time in April and we have an appointment scheduled for June so we > really don't need to see her at the convention. > > If we had been able to attend Holliston, I wouldn't even consider > it. However, we haven't meet any other families yet and I would > really like to. > > Any suggestions or opinions out there? > > Judith, Steve, and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Way to go Storm....glad to hear great news!!!! Sincerely, Diane mom to a, 4, RSS, UPD7, 25lbs. 35 in. & Nichoals, 6 1/2 > Hi all! > I was just thinking we should have some kind of get together for List members at the convention. (Some way to figure out who everyone is) Well, Like you'll know who I am once you hear I'm Storm's mom, but he has an unusual name. I don't know just thinking on (well, not paper but on computer). > Carmen > PS Storm was weighed at the peds office and officially has gained 2.5 pounds since March 16th. > We are pretty excited about it! That's why Dr. H upped his meds, just to match his weight gain. > We FINALLY passed 27 pounds after almost a year!!!!!!!!!!!!!!!!!!!!!!!!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Judith & Steve, One idea would be to bring , but leave at home. I don't know if you would want to do that, but other parents have only brought their affected children and left other children at home with family. I just can't tell you how great it was for us last year to go the convention (our first) and to actually meet people who knew what we were going through and to see other kids (older kids) succeeding and actually being quite great small kids! We learned soooo much and I think it actually brought us together more on what we wanted for Storm because we both got to see and hear everything first hand. There are some who for whatever reason, only Mom or Dad came with no kids, but for us it was just better for us to both be their. Do what you think is best for your family, but I would suggest that you come. They have great stuff for the kids. Storm loved the daycare (playing with other kids his size!). He made a lot of friends. Hope this helps! Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Debby, Last year there were name tags. Each disorder had it's own color so you could find other in your group. It worked great! Don't worry, I'll be saying " Paisley & Storm get back over here! " a great deal myself! Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 What's my reason for going to the convention (which I should book!!! mental note !) is for Adam to meet other kids and do the usual " how old are you " and guess what?? He WILL be taller than the 6's and he may meet an 8 who is his height and he may even meet a 9 who is smaller than him!! Imagine, he has never had that!! What a thrill that will be for him. I've learned so much here, that I doubt any great light bulbs are going to go off in my head while I'm there. And for me, I want to meet the people who have become family and have helped Adam and I more than any one else has EVER since we began this road of RSS. Finally I guess the bonus would be to meet Dr. H. She wanted me to send her pictures of Adam (which I never did get to) so it will be interesting for her to do her visual scan and see if he is RSS. Everyone else says he is, but she had a nagging question in her mind. So I think I'd like to get that tid bit of info gathered. Anyway, just my piddly 2 cents (canadian) Debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 What's my reason for going to the convention (which I should book!!! mental note !) is for Adam to meet other kids and do the usual " how old are you " and guess what?? He WILL be taller than the 6's and he may meet an 8 who is his height and he may even meet a 9 who is smaller than him!! Imagine, he has never had that!! What a thrill that will be for him. I've learned so much here, that I doubt any great light bulbs are going to go off in my head while I'm there. And for me, I want to meet the people who have become family and have helped Adam and I more than any one else has EVER since we began this road of RSS. Finally I guess the bonus would be to meet Dr. H. She wanted me to send her pictures of Adam (which I never did get to) so it will be interesting for her to do her visual scan and see if he is RSS. Everyone else says he is, but she had a nagging question in her mind. So I think I'd like to get that tid bit of info gathered. Anyway, just my piddly 2 cents (canadian) Debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 What's my reason for going to the convention (which I should book!!! mental note !) is for Adam to meet other kids and do the usual " how old are you " and guess what?? He WILL be taller than the 6's and he may meet an 8 who is his height and he may even meet a 9 who is smaller than him!! Imagine, he has never had that!! What a thrill that will be for him. I've learned so much here, that I doubt any great light bulbs are going to go off in my head while I'm there. And for me, I want to meet the people who have become family and have helped Adam and I more than any one else has EVER since we began this road of RSS. Finally I guess the bonus would be to meet Dr. H. She wanted me to send her pictures of Adam (which I never did get to) so it will be interesting for her to do her visual scan and see if he is RSS. Everyone else says he is, but she had a nagging question in her mind. So I think I'd like to get that tid bit of info gathered. Anyway, just my piddly 2 cents (canadian) Debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Hi Judith and Steve, Well, I'm attending but I'm just bringing to the convention for many reasons one being cost. Second, it will be a vacation for me just having and not my other two. They're staying home with Dad. Based on what I've experienced with multiples, especially 2 (in my case 3) 15 month olds, it would be too much work just getting to Chicago, then you still have to take care of both kids while you're there. I'm not sure if you'd get much benefit out of the convention if you had the whole family. Why don't you guys split up and one goes and one stays. Next year you could take turns at going. You could cancel your appt. with Dr. H in June and just see her in July. I'm not sure where you're traveling from, but we drive into NY from CT and it's such a pain to get there. I'd rather have a little R & R in Chicago and forget NY for at least one visit. Just my 2 cents. Cheryl Mom to , , and - all 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Hi Judith and Steve, Well, I'm attending but I'm just bringing to the convention for many reasons one being cost. Second, it will be a vacation for me just having and not my other two. They're staying home with Dad. Based on what I've experienced with multiples, especially 2 (in my case 3) 15 month olds, it would be too much work just getting to Chicago, then you still have to take care of both kids while you're there. I'm not sure if you'd get much benefit out of the convention if you had the whole family. Why don't you guys split up and one goes and one stays. Next year you could take turns at going. You could cancel your appt. with Dr. H in June and just see her in July. I'm not sure where you're traveling from, but we drive into NY from CT and it's such a pain to get there. I'd rather have a little R & R in Chicago and forget NY for at least one visit. Just my 2 cents. Cheryl Mom to , , and - all 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Regarding the convention: I like the idea of a separate room to meet Dr. H. There was so much noise and activity in the large meeting rooms, it wasn't really ideal for having a consultation with a doctor. Someone mentioned that it was good for meeting other RSS families, but it seems like there are plenty of other opportunities for that kind of socializing at the convention; we shouldn't allow that to interfere with this opportunity for " quality time " with Dr. H. - Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Can I just tell you how warm and fuzzy I feel right now!!! First of all, that so many people are willing to help mail brochures to help raise money for our FRIENDS that otherwise would not be able to attend the convention. Now, people are offering to volunteer, too!!!! Yes, I am going to get through the next two weeks, and then I will be tackling the specifics of the convention. Thanks to everyone. RSS-Support wrote: > Well, yesterday we mailed in our convention registration, and hope many of you have as well! It'll be so great to meet so many of us on the list serve (as well as those that are not)! > > Suggestion to : > > I don't know how many volunteers you will be needing, but if you send a letter to attendees before the convention, maybe you could ask the families if they want to be " volunteers " for an hour or so...either welcoming, getting people the " beepers " , etc, etc,. > > I will be able to help, and I bet if you let those attending know of the specific volunteering needs, many many would give an hour or two of the weekend to assist you and our division (especially if they have a spouse also coming who could watch their child/children while they volunteer). > > Again, I do know you're focusing on fundraising, so put this idea aside if you think it will help! > > > Cheryl V. > wife to > mom to (age 9 at the end of May, RSS) > mom to (age 6) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Dear Judith and Steve, I am sorry that you will not be able to attend the convention this year, but did you know that you can still get a video of the speakers? At least you can still hear what they have to say.... My husband and I are considering offering our home for an informal RSS get-together for the NY, NJ, CT metro area. We live in Madison, just outside of town, so that would not be a terrible drive for you. The problem is that the summer is coming up so quickly! I am a supervisor at a day camp and I am going to the convention to be Dr. H's righthand person, so I don't know if I will be able to handle a get-together at this point. In addition, Max's bar mitzvah is the weekend of September 8th, so there is a physical limit to how much I can do. But if I decide to do anything, I will definitely let you know. Jodi Convention > Thanks to everyone who responsed to my solicitation of opinions. We > have decided that it is just not an option for us this year. Next > year when the twins are bigger we will try to attend with both > children. > > We would still love to meet another RSS-family. We are located in > Westchester County NY. We don't mind traveling, so NY, NJ or CT are > certainly " do-able " . > > Also, if anyone has an appointment coming up with Dr. H and would > like to get together we could try that. Unfortunately, our apartment > is too small to offer anyone a place to stay. > > As always, thanks to everyone. This group is a lifeline. > > Judith, Steve, (15mo today, 10 lb 14 oz RSS)and (15 mo > today non RSS) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Judith, Hi. I know it is a hard decision. I just wanted to let you know you wouldn't be the only one with your hands full if you go. We could sit together and complain.LOL I am going to go with my 5 kids. We are planning on my sister taking a couple of them for a little while here and there. She lives in Chicago and wants to spend some time with them. We are going to have to organize everything with out home health care company. They are having to mail all of Avery's supplies to the hotel. We had to get their okay before we definetly could go. They were really nice and said it would be no problem. I will be taking diapers for my 16 month old and Avery's pumps. I may have to bring a couple of those kid leash things so that my kids don't get lost. Debby, if you need one I will try to get one for you too! LOL I've never had one but it wouldn't be the worst thing in the world. I wonder if my ten year old would wear one:) I don't know, I could try and convince her that it is the latest trend! I was just wondering, do most of you bring your whole family or just a few of them?? Anyway Judith, we could help eachother out if you decide to go. I'm sure my son Adam would love to meet your little ones! Pamela cb@... wrote: > I am looking for some opinions. Our son (15 > mo 10 lb 14 oz > RSS) was diagnosed this year with RSS. This would > be our first > convention. We cannot decide whether or not to > attend. First of > all, if we leave (and his twin sister ) > home, we are > concerned that he will not eat for 4 days. Although > their nanny will > be with them during the day Thursday and Friday, > that still leaves 2 > nights and the weekend where people who don't > usually take care of > the children will be watching them. just > doesn't eat as well > for other people. > > Second are the logistics in bringing two 15 month > olds - diapers, > baby food for , etc. > > Third, we are already patients of Dr. H. We saw her > for the first > time in April and we have an appointment scheduled > for June so we > really don't need to see her at the convention. > > If we had been able to attend Holliston, I wouldn't > even consider > it. However, we haven't meet any other families yet > and I would > really like to. > > Any suggestions or opinions out there? > > Judith, Steve, and > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Hi Jodi: I don't know how you do it all! When do you find 5 minutes for yourself? I thought I had a lot on my plate with twins, 's PT 2x/weel, feeding specialist 1x/week, nutritionist 1x/week and soon to be OT (hopefully only 1x/week - we are running out of available days). Thank god the nutritionist comes to us on Friday nights. Then is being evaluated for early intervention and we are probably going to be adding PT and developmental for her. Between the convention, camp and bar mitzvah, you must be drowning. Although, its for good things. Anyway, if you do decide to host something, we would be happy to help out. I promise, we will be there. I would love to meet another RSS family. Although this group is fantastic, it would be great to actually meet other people. Hopefully next year we will be able to make the convention. Judith, Steve, (RSS) and (who just cut her 4th tooth - when do you stop counting them?) > Dear Judith and Steve, > > I am sorry that you will not be able to attend the convention this year, but > did you know that you can still get a video of the speakers? At least you > can still hear what they have to say.... > > My husband and I are considering offering our home for an informal RSS > get-together for the NY, NJ, CT metro area. We live in Madison, just > outside of town, so that would not be a terrible drive for you. The > problem is that the summer is coming up so quickly! I am a supervisor at a > day camp and I am going to the convention to be Dr. H's righthand person, so > I don't know if I will be able to handle a get-together at this point. In > addition, Max's bar mitzvah is the weekend of September 8th, so there is a > physical limit to how much I can do. But if I decide to do anything, I will > definitely let you know. > > Jodi > > Convention > > > > Thanks to everyone who responsed to my solicitation of opinions. We > > have decided that it is just not an option for us this year. Next > > year when the twins are bigger we will try to attend with both > > children. > > > > We would still love to meet another RSS-family. We are located in > > Westchester County NY. We don't mind traveling, so NY, NJ or CT are > > certainly " do-able " . > > > > Also, if anyone has an appointment coming up with Dr. H and would > > like to get together we could try that. Unfortunately, our apartment > > is too small to offer anyone a place to stay. > > > > As always, thanks to everyone. This group is a lifeline. > > > > Judith, Steve, (15mo today, 10 lb 14 oz RSS)and (15 mo > > today non RSS) > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Hi Jodi: I don't know how you do it all! When do you find 5 minutes for yourself? I thought I had a lot on my plate with twins, 's PT 2x/weel, feeding specialist 1x/week, nutritionist 1x/week and soon to be OT (hopefully only 1x/week - we are running out of available days). Thank god the nutritionist comes to us on Friday nights. Then is being evaluated for early intervention and we are probably going to be adding PT and developmental for her. Between the convention, camp and bar mitzvah, you must be drowning. Although, its for good things. Anyway, if you do decide to host something, we would be happy to help out. I promise, we will be there. I would love to meet another RSS family. Although this group is fantastic, it would be great to actually meet other people. Hopefully next year we will be able to make the convention. Judith, Steve, (RSS) and (who just cut her 4th tooth - when do you stop counting them?) > Dear Judith and Steve, > > I am sorry that you will not be able to attend the convention this year, but > did you know that you can still get a video of the speakers? At least you > can still hear what they have to say.... > > My husband and I are considering offering our home for an informal RSS > get-together for the NY, NJ, CT metro area. We live in Madison, just > outside of town, so that would not be a terrible drive for you. The > problem is that the summer is coming up so quickly! I am a supervisor at a > day camp and I am going to the convention to be Dr. H's righthand person, so > I don't know if I will be able to handle a get-together at this point. In > addition, Max's bar mitzvah is the weekend of September 8th, so there is a > physical limit to how much I can do. But if I decide to do anything, I will > definitely let you know. > > Jodi > > Convention > > > > Thanks to everyone who responsed to my solicitation of opinions. We > > have decided that it is just not an option for us this year. Next > > year when the twins are bigger we will try to attend with both > > children. > > > > We would still love to meet another RSS-family. We are located in > > Westchester County NY. We don't mind traveling, so NY, NJ or CT are > > certainly " do-able " . > > > > Also, if anyone has an appointment coming up with Dr. H and would > > like to get together we could try that. Unfortunately, our apartment > > is too small to offer anyone a place to stay. > > > > As always, thanks to everyone. This group is a lifeline. > > > > Judith, Steve, (15mo today, 10 lb 14 oz RSS)and (15 mo > > today non RSS) > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Hi Jodi: I don't know how you do it all! When do you find 5 minutes for yourself? I thought I had a lot on my plate with twins, 's PT 2x/weel, feeding specialist 1x/week, nutritionist 1x/week and soon to be OT (hopefully only 1x/week - we are running out of available days). Thank god the nutritionist comes to us on Friday nights. Then is being evaluated for early intervention and we are probably going to be adding PT and developmental for her. Between the convention, camp and bar mitzvah, you must be drowning. Although, its for good things. Anyway, if you do decide to host something, we would be happy to help out. I promise, we will be there. I would love to meet another RSS family. Although this group is fantastic, it would be great to actually meet other people. Hopefully next year we will be able to make the convention. Judith, Steve, (RSS) and (who just cut her 4th tooth - when do you stop counting them?) > Dear Judith and Steve, > > I am sorry that you will not be able to attend the convention this year, but > did you know that you can still get a video of the speakers? At least you > can still hear what they have to say.... > > My husband and I are considering offering our home for an informal RSS > get-together for the NY, NJ, CT metro area. We live in Madison, just > outside of town, so that would not be a terrible drive for you. The > problem is that the summer is coming up so quickly! I am a supervisor at a > day camp and I am going to the convention to be Dr. H's righthand person, so > I don't know if I will be able to handle a get-together at this point. In > addition, Max's bar mitzvah is the weekend of September 8th, so there is a > physical limit to how much I can do. But if I decide to do anything, I will > definitely let you know. > > Jodi > > Convention > > > > Thanks to everyone who responsed to my solicitation of opinions. We > > have decided that it is just not an option for us this year. Next > > year when the twins are bigger we will try to attend with both > > children. > > > > We would still love to meet another RSS-family. We are located in > > Westchester County NY. We don't mind traveling, so NY, NJ or CT are > > certainly " do-able " . > > > > Also, if anyone has an appointment coming up with Dr. H and would > > like to get together we could try that. Unfortunately, our apartment > > is too small to offer anyone a place to stay. > > > > As always, thanks to everyone. This group is a lifeline. > > > > Judith, Steve, (15mo today, 10 lb 14 oz RSS)and (15 mo > > today non RSS) > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I too will be attending without husband or children. Are beer drinkers invited to this margarita party????????????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I too will be attending without husband or children. Are beer drinkers invited to this margarita party????????????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I too will be attending without husband or children. Are beer drinkers invited to this margarita party????????????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 OK if the blender is broken, I usually go for something canadian like Molson or Labatts Peace and Prayers Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Absolutely!!!! If they don't have strawberry dacquiris, then I am having a Corona Light or Amstel Light! Anyone else!!! RSS-Support wrote: > I too will be attending without husband or children. Are beer drinkers > invited to this margarita party????????????? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Sure!!! We'll all have a great time! Jodi Re: Convention > I too will be attending without husband or children. Are beer drinkers > invited to this margarita party????????????? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Sure!!! We'll all have a great time! Jodi Re: Convention > I too will be attending without husband or children. Are beer drinkers > invited to this margarita party????????????? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 They better have strawberry dacquiris! I'm counting on them. (Note the " them. " ) I don't drink beer, much to my husband's dismay. Jodi Re: Re: Convention > Absolutely!!!! If they don't have strawberry dacquiris, then I am having a Corona Light or Amstel Light! Anyone else!!! > > > RSS-Support wrote: > > > > I too will be attending without husband or children. Are beer drinkers > > > invited to this margarita party????????????? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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