Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Hi Maggie, I just checked the latest Magic Touch Newsletter and it says July 20- 23. Hope to see you there! Dawna > > I am usually the quiet, non participating ,Grandmother who reads all > your letters, cries for your children, and count my blessings that my > 8 month old granddaughter,Devan, is doing pretty well for a child with > RSS. I do , however, have to ask, when, and where, is the 2006 > convention? In one article from the Magic Foundation it says the > dates are July 20- 23. In one of the notes posted on Yahoo someone > mentioned it was July 21 - 24. I would like to take my daughter and my > grandchildren this year as a gift for my daughters 30th birthday. I > understand how important it is that she have friends who are in the > same boat as she is, for you are all the only ones who truly > understand what her family is going through.Thank you all for sharing > your life with other families. You have answered many questions and, > most importantly, made us all feel that we are not alone. > Maggie S.aka,Oma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Hey Maggie welcome to your New 2nd " HOME " . You will love it here. My name is Sheldon and i am the G-PA to Laikyn who is 3 3/4 with RSS. I won't go into the GRANDPARENTS club being my good friend PAT already informed you of it. This is a great home so come as often as you like. Sheldon (G-PA to Laikyn, RSS, from Snowy but warm North Dakota) 2006 Convention I am usually the quiet, non participating ,Grandmother who reads all your letters, cries for your children, and count my blessings that my 8 month old granddaughter,Devan, is doing pretty well for a child with RSS. I do , however, have to ask, when, and where, is the 2006 convention? In one article from the Magic Foundation it says the dates are July 20- 23. In one of the notes posted on Yahoo someone mentioned it was July 21 - 24. I would like to take my daughter and my grandchildren this year as a gift for my daughters 30th birthday. I understand how important it is that she have friends who are in the same boat as she is, for you are all the only ones who truly understand what her family is going through.Thank you all for sharing your life with other families. You have answered many questions and, most importantly, made us all feel that we are not alone. Maggie S.aka,Oma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Maggie - welcome. Glad to see you here. Ian's grandma has been a lurker here too on many occasion. It's so nice to see more and more extended family members participating. I enjoy having my mom here too because it helps us stay connected with Ian's issues - being that she is quite far away from us. Hopefully, we will be able to answer all of your questions! - H > > I am usually the quiet, non participating ,Grandmother who reads all > your letters, cries for your children, and count my blessings that my > 8 month old granddaughter,Devan, is doing pretty well for a child with > RSS. I do , however, have to ask, when, and where, is the 2006 > convention? In one article from the Magic Foundation it says the > dates are July 20- 23. In one of the notes posted on Yahoo someone > mentioned it was July 21 - 24. I would like to take my daughter and my > grandchildren this year as a gift for my daughters 30th birthday. I > understand how important it is that she have friends who are in the > same boat as she is, for you are all the only ones who truly > understand what her family is going through.Thank you all for sharing > your life with other families. You have answered many questions and, > most importantly, made us all feel that we are not alone. > Maggie S.aka,Oma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 <<I enjoy having my mom here too because it helps us stay connected with Ian's issues - being that she is quite far away from us>> You two must have a GREAT relationship. I don't know how I would feel being on a group with my mother.. Not that it will ever be an issuse, as she does not own a computer and dosen't want one!! R Mom to Jed (12) Asthma, tics, CAPD Liam (5) Asthma, Epilepsy, Hearing impaired, SGA, Food Allergies. Orlando Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 - I like to say we have a great relationship. She'll probably tell you the same. Mom? Any comments? LOL - H > > <<I enjoy having my mom here > too because it helps us stay connected with Ian's issues - being > that she is quite far away from us>> > > You two must have a GREAT relationship. I don't know how I would feel being > on a group with my mother.. Not that it will ever be an issuse, as she does > not own a computer and dosen't want one!! > > R > Mom to Jed (12) Asthma, tics, CAPD > Liam (5) Asthma, Epilepsy, Hearing impaired, > SGA, Food Allergies. > Orlando Fl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 > > > > <<I enjoy having my mom here > > too because it helps us stay connected with Ian's issues - being > > that she is quite far away from us>> > > > > You two must have a GREAT relationship. I don't know how I would > feel being > > on a group with my mother.. Not that it will ever be an issuse, as > she does > > not own a computer and dosen't want one!! > > > > R > > Mom to Jed (12) Asthma, tics, CAPD > > Liam (5) Asthma, Epilepsy, Hearing impaired, > > SGA, Food Allergies. > > Orlando Fl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Thank you Sheldon and Pat and all the group for such a warm welcome! I will be watching the flight prices out of Albany,NY to Chicago for July. I have frequent flyers with Southwest but it flies into Midway, not O'Hare. I'll be checking to see if this is way out of the way. Is the convention always held at the Marriott O'Hare? I joined Magic and signed up my daughter and husband too, so hopefully they send all the info soon. Just a little background- my granddaughter , Devan Caitrin, is eight months old and was weighed by her nurse on Monday with a whopping 8 oz. gain in two weeks, so she is 10lbs. 12 ozs. We are very excited! She was SGA and weighed 4lbs. 9 ozs. at birth. She was positively diagnosed by the blood test in November for RSS.We are blessed that she has not been troubled with reflux and her glucose has been normal, even when she was sick with an ear infection. She has a high palate so we are sure she will need speech therapy down the road. She also has a left sided weakness but is getting PT every week and is slowly gaining strength. She is a very spunky and VERY happy little darling, thinks she can throw herself right out of our arms and walk! We'd just like to get her crawling for now! This attitude and spunk will get her through life! I have a five year old grandson,Tyler, who she thinks is the greatest and he feels the same about her! Devan has a Mickey button and is tube fed three times a day. She is eating solid foods( run through a mill first!) and relishes eating when she is fed! Of course, she could go all day without eating but when she sees us eating or is put in her chair to eat, she is like a little bird, mouth wide open for every bite. It blows me away sometimes, you would think she would be a little porker! I work for an OB-GYN office and, luckily, have some networking with physicians. My biggest gripe is the insurance companies but I am hell on wheels when it comes to my children and I will use every source I have to be sure that Devans care is covered! I thought grandparenting would be fun and easy. Personally, I think it is harder than parenting because now we worry about our children AND their children! I lost a daughter 15 years ago to meningitis and I wish my mother had lived long enough to see our little Devan and for me to apologize for not understanding what she must have gone through when her daughter was suffering so badly. She lost her granddaughter and lost me for a while too.I can only hope that she is Devans advocate with someone with a higher power than us all. Thank you again, I'll keep reading and printing your letters that make me say " hmmmm, I didn't know that....PS have any of you found any companies that sell baby products specifically made for little people? That is another frustration. All the baby equipment that is meant for the age group is always too big! Also, did your children take naps during the day ? Devan can survive on catnaps all day until she finally collapses at around 7:30 for the night. She has been doing this since birth!It's no wonder she doesn't gain, she burns so many calories being awake!!!! Thank goodness for those hours at night! 2006 Convention I am usually the quiet, non participating ,Grandmother who reads all your letters, cries for your children, and count my blessings that my 8 month old granddaughter,Devan, is doing pretty well for a child with RSS. I do , however, have to ask, when, and where, is the 2006 convention? In one article from the Magic Foundation it says the dates are July 20- 23. In one of the notes posted on Yahoo someone mentioned it was July 21 - 24. I would like to take my daughter and my grandchildren this year as a gift for my daughters 30th birthday. I understand how important it is that she have friends who are in the same boat as she is, for you are all the only ones who truly understand what her family is going through.Thank you all for sharing your life with other families. You have answered many questions and, most importantly, made us all feel that we are not alone. Maggie S.aka,Oma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 hi maggie!! welcome to the group!! my mom joined the grandparents club at convention last year as well. she doesnt post be reads from time to time. as far as flying into midway, we always fly into ohara. i know some peole have flown into midway but i understand that you then have to take a cab to ohara which is around $40 one way (chrissy did this last year and could tell you better) then you have to get the shuttle from ohara to the hotel unless of course you want to pay the cab to take you right to the hotel. try orbitz for tickets as well they seem to be really cheap. look forward to meeting you and your family this year!! jodie c (nicholas-7 1/2 nonrss, christopher-5 rss 31 1/2lbs 39 1/8 " periacin 6.8, ght genotrpin .7, assmentry (left side 1cm leg difference), scoliosis 8 degree curve, ADHD & OCD possible, athon-2 1/2 nonrss) PS when you say she had a blood test for rss that was positive do you me the UPD7 test? because there really isnt any test for rss, just 10% of the kids have this genetic marker. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Where are you located? I noticed you mentioned Albany. We spend alot of time in Binghamton with my fiance's family. Maggie Sievert wrote: Thank you Sheldon and Pat and all the group for such a warm welcome! I will be watching the flight prices out of Albany,NY to Chicago for July. I have frequent flyers with Southwest but it flies into Midway, not O'Hare. I'll be checking to see if this is way out of the way. Is the convention always held at the Marriott O'Hare? I joined Magic and signed up my daughter and husband too, so hopefully they send all the info soon. Just a little background- my granddaughter , Devan Caitrin, is eight months old and was weighed by her nurse on Monday with a whopping 8 oz. gain in two weeks, so she is 10lbs. 12 ozs. We are very excited! She was SGA and weighed 4lbs. 9 ozs. at birth. She was positively diagnosed by the blood test in November for RSS.We are blessed that she has not been troubled with reflux and her glucose has been normal, even when she was sick with an ear infection. She has a high palate so we are sure she will need speech therapy down the road. She also has a left sided weakness but is getting PT every week and is slowly gaining strength. She is a very spunky and VERY happy little darling, thinks she can throw herself right out of our arms and walk! We'd just like to get her crawling for now! This attitude and spunk will get her through life! I have a five year old grandson,Tyler, who she thinks is the greatest and he feels the same about her! Devan has a Mickey button and is tube fed three times a day. She is eating solid foods( run through a mill first!) and relishes eating when she is fed! Of course, she could go all day without eating but when she sees us eating or is put in her chair to eat, she is like a little bird, mouth wide open for every bite. It blows me away sometimes, you would think she would be a little porker! I work for an OB-GYN office and, luckily, have some networking with physicians. My biggest gripe is the insurance companies but I am hell on wheels when it comes to my children and I will use every source I have to be sure that Devans care is covered! I thought grandparenting would be fun and easy. Personally, I think it is harder than parenting because now we worry about our children AND their children! I lost a daughter 15 years ago to meningitis and I wish my mother had lived long enough to see our little Devan and for me to apologize for not understanding what she must have gone through when her daughter was suffering so badly. She lost her granddaughter and lost me for a while too.I can only hope that she is Devans advocate with someone with a higher power than us all. Thank you again, I'll keep reading and printing your letters that make me say " hmmmm, I didn't know that....PS have any of you found any companies that sell baby products specifically made for little people? That is another frustration. All the baby equipment that is meant for the age group is always too big! Also, did your children take naps during the day ? Devan can survive on catnaps all day until she finally collapses at around 7:30 for the night. She has been doing this since birth!It's no wonder she doesn't gain, she burns so many calories being awake!!!! Thank goodness for those hours at night! 2006 Convention I am usually the quiet, non participating ,Grandmother who reads all your letters, cries for your children, and count my blessings that my 8 month old granddaughter,Devan, is doing pretty well for a child with RSS. I do , however, have to ask, when, and where, is the 2006 convention? In one article from the Magic Foundation it says the dates are July 20- 23. In one of the notes posted on Yahoo someone mentioned it was July 21 - 24. I would like to take my daughter and my grandchildren this year as a gift for my daughters 30th birthday. I understand how important it is that she have friends who are in the same boat as she is, for you are all the only ones who truly understand what her family is going through.Thank you all for sharing your life with other families. You have answered many questions and, most importantly, made us all feel that we are not alone. Maggie S.aka,Oma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 We actually live in Delmar, a suburb of Albany County. My daughter and her husband live here too, so I am close and am able to see the kids every week, something I am quite happy about Maggie 2006 Convention I am usually the quiet, non participating ,Grandmother who reads all your letters, cries for your children, and count my blessings that my 8 month old granddaughter,Devan, is doing pretty well for a child with RSS. I do , however, have to ask, when, and where, is the 2006 convention? In one article from the Magic Foundation it says the dates are July 20- 23. In one of the notes posted on Yahoo someone mentioned it was July 21 - 24. I would like to take my daughter and my grandchildren this year as a gift for my daughters 30th birthday. I understand how important it is that she have friends who are in the same boat as she is, for you are all the only ones who truly understand what her family is going through.Thank you all for sharing your life with other families. You have answered many questions and, most importantly, made us all feel that we are not alone. Maggie S.aka,Oma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Maggie, The convention is always at the Marriott O'Hare. As far as I know, there are no plans to change it. It's a great facility and the staff does everything they can to assure our comfort and well-being. You can fly in to Midway if it is more convenient and won't cost you money, just miles. It's about a 40? minute ride to O'Hare where you can get a free van to take you to the hotel. I don't know if O'Hare provides free transportation to that airport, but you could check it out. Of course, if you are paying to get to O'Hare, it might not be unreasonable to just go ahead and go straight to the hotel. Jodi Z Quote Link to comment Share on other sites More sharing options...
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