Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Hello Rae My name is mom to igh 26 months and 19.5 pounds. I asw your pictures, what a darling. They made me cry though bringing back all of the memories of when igh was born. We have been through so much but she sure is worth it. Hang in there, you have a beautiful child that is always going to be perfect to you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Hello!!! What a wonderful baby!! She looks a lot like my son Mattias who is now 10 months old. Please have a look in his photoalbum. We don´t live in UK, but closer than US. We live in Stockholm, Sweden. Our son was born full term pregnancy. He weight 2100 gram and was 41 cm tall (short). He is doing very well and eats a lot. Still small ofcourse but a great personality./// Helén mother of Mica 13 years old and Mattias 10 months old with RSS. > Hi everyone, > > I am mum to , who is 6 months old and recently diagnosed as RSS. > I'd like to say hi and let you know that I am reading the messages on > the board, and look forward to posting again in the future. > > 's history until now: she was born at 35 weeks weighing 3lbs 3oz > (1046g) and measured 36cm (14 in) Severe asymmetric IUGR had been > picked up on ultrasound and we were having regular growth scans until > she was delivered by c-section. All dopplers were fine. When she was > born she had very little body fat, and a large head in comparison to > her body. > > She has been growing well, altho is way off the growth charts. She is > now 8lbs 13 oz (4050g) and measures 53.5cm (21in). > > She has been diagnosed with RSS as she fulfills many of the > characteristics, namely normal head size, reduced weight and height, > broad forehead, small chin, blue sclera, dilation of the left > ventricle, low set ears, curved little fingers and triangular face. > You can see some photos of her on http://www.pidcock.co.uk/emily > > She seems to feed OK so far - she has 5oz of milk 6x a day and is > eating two solid meals of fruit or veg. Some feed times are a real > fight, but this is probably normal with any baby. She sweat a lot at > night, but her blood sugar levels were OK at birth. This is somthing > that she will be tested for soon when we meet with the endrocrinologist. > > I would love to hear other people's stories and also to know if there > are any of you in the UK (altho I realise this is a predominantly US > site). > > Bye for now > Rae & Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 - Hello again I just realised how much eats. How on earth do you get her to eat that much? I thougt that Mattias is a good eater for an RSS kid, but he is not eating as much as . Have you got any tips for us?? Mattias is eating two solid meals a day and three bottles of high energy milk formula (120 ml ot 4,5 oz). Love to hear from you again./// Helén -- In RSS-Support@y..., " sunrae_24 " wrote: > Hi everyone, > > I am mum to , who is 6 months old and recently diagnosed as RSS. > I'd like to say hi and let you know that I am reading the messages on > the board, and look forward to posting again in the future. > > 's history until now: she was born at 35 weeks weighing 3lbs 3oz > (1046g) and measured 36cm (14 in) Severe asymmetric IUGR had been > picked up on ultrasound and we were having regular growth scans until > she was delivered by c-section. All dopplers were fine. When she was > born she had very little body fat, and a large head in comparison to > her body. > > She has been growing well, altho is way off the growth charts. She is > now 8lbs 13 oz (4050g) and measures 53.5cm (21in). > > She has been diagnosed with RSS as she fulfills many of the > characteristics, namely normal head size, reduced weight and height, > broad forehead, small chin, blue sclera, dilation of the left > ventricle, low set ears, curved little fingers and triangular face. > You can see some photos of her on http://www.pidcock.co.uk/emily > > She seems to feed OK so far - she has 5oz of milk 6x a day and is > eating two solid meals of fruit or veg. Some feed times are a real > fight, but this is probably normal with any baby. She sweat a lot at > night, but her blood sugar levels were OK at birth. This is somthing > that she will be tested for soon when we meet with the endrocrinologist. > > I would love to hear other people's stories and also to know if there > are any of you in the UK (altho I realise this is a predominantly US > site). > > Bye for now > Rae & Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Rae, Thank you for letting me have a little glimpse into your life with . She is absolutely adorable and looks like such a happy baby!!!! With my non-RSS child, Jenna, who is 17 and my RSS child, Maxwell, who is now 14, I miss those baby years so much! Now I get lots of rude comments and disgusted looks. My children who once worshipped my husband and me, now think that I am old fashioned and stupid. Thank goodness I teach school. That is where I keep my sanity! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Hi Rae, the photos of are just beautiful. I can't get over how much she looks like Darcy at that age. Darcy was born full term 3lb 11 (1676g) 40.5cm, now he's 34 months 7.8kg 82cm (a few months ago now) and he is just delightful. Welcome to our group :-) {{HUGS}} Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Hi Rae, Really enjoyed looking at 's pictures - my son Finlay - (nearly 3) was 3lbs 5oz at birth - born at 38 weeks by c section - sounds like we had similar obstetric histories! Ive recently had baby number 2 who was a whopping 8lbs 6oz - so a completely different experience!!! We live in New Zealand but I am from Scotland (Fife) so I'm always interested to read about the care and treatment of RSS kids in the UK just incase we ever end up back over there! Do you see Dr Stanhope in London? Anyway welcome to our group Mum to Finlay (nearly 3) 83cms, 10kgs and Logan (5 months) and almost as heavy as his big brother!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2002 Report Share Posted September 27, 2002 Hi Rae, Really enjoyed looking at 's pictures - my son Finlay - (nearly 3) was 3lbs 5oz at birth - born at 38 weeks by c section - sounds like we had similar obstetric histories! Ive recently had baby number 2 who was a whopping 8lbs 6oz - so a completely different experience!!! We live in New Zealand but I am from Scotland (Fife) so I'm always interested to read about the care and treatment of RSS kids in the UK just incase we ever end up back over there! Do you see Dr Stanhope in London? Anyway welcome to our group Mum to Finlay (nearly 3) 83cms, 10kgs and Logan (5 months) and almost as heavy as his big brother!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Hi Rae Just A quick note.Yes there are a few of us from the UK.Are you a member of the CGF,if not its worth joining.Two weekends ago we had a conference in london[maybe next year] Childs the boss of the RSS/IUGR group is on this listserve.As for me ,I have a 6 1/2 year old with RSS.He was 4lbs 13oz at full term,had no catch up growth,was dx at 22months at GOSH and started growth hormone injections at 23 months old.He is now on the 25 % centile for height and weight and is doing great!Oh and I live in Herts. Joanne PS very cute pictures Introducing > Hi everyone, > > I am mum to , who is 6 months old and recently diagnosed as RSS. > I'd like to say hi and let you know that I am reading the messages on > the board, and look forward to posting again in the future. > > 's history until now: she was born at 35 weeks weighing 3lbs 3oz > (1046g) and measured 36cm (14 in) Severe asymmetric IUGR had been > picked up on ultrasound and we were having regular growth scans until > she was delivered by c-section. All dopplers were fine. When she was > born she had very little body fat, and a large head in comparison to > her body. > > She has been growing well, altho is way off the growth charts. She is > now 8lbs 13 oz (4050g) and measures 53.5cm (21in). > > She has been diagnosed with RSS as she fulfills many of the > characteristics, namely normal head size, reduced weight and height, > broad forehead, small chin, blue sclera, dilation of the left > ventricle, low set ears, curved little fingers and triangular face. > You can see some photos of her on http://www.pidcock.co.uk/emily > > She seems to feed OK so far - she has 5oz of milk 6x a day and is > eating two solid meals of fruit or veg. Some feed times are a real > fight, but this is probably normal with any baby. She sweat a lot at > night, but her blood sugar levels were OK at birth. This is somthing > that she will be tested for soon when we meet with the endrocrinologist. > > I would love to hear other people's stories and also to know if there > are any of you in the UK (altho I realise this is a predominantly US > site). > > Bye for now > Rae & > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Hello Rae There are a few of us from the UK I have a daughter Georgia who is 5 years old. She was diagnosed with RSS when she was 14 months so you were very 'lucky' to have such an early diagnosis. Georgia is now doing incredibly well. She started growth hormone Feb 2001. She then weighed around 8kg and was about 78cm. She had her six month check on Friday and she now weighs 13.5kg and is 98cm. I don't know whether you know of the Child Growth Foundation. I am the membership secretary and my husband Nick and myself also run the RSS/IUGR support group for the Child Growth Foundation. If you are interested in joining let me know. My e-mail address is: jenny_cgf@... Where abouts in the UK are you? We are in Sutton Coldfield. Best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Hello again Rae Just in case you try e-mailing me; in between jenny cgf you need also _ (underscore). Hope that makes sense. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hi , Thanks for your message. I contacted the CGF and they are sending me a membership pack, so I guess you will soon be hearing from me through there. We are in London - currently in Wimbledon, but hoping to move to Kingston upon Thames later this year. Will be in touch soon, Thanks Rae > Hello Rae > There are a few of us from the UK > I have a daughter Georgia who is 5 years old. She was diagnosed with RSS when she was 14 months so you were very 'lucky' to have such an early diagnosis. > Georgia is now doing incredibly well. She started growth hormone Feb 2001. She then weighed around 8kg and was about 78cm. She had her six month check on Friday and she now weighs 13.5kg and is 98cm. > I don't know whether you know of the Child Growth Foundation. I am the membership secretary and my husband Nick and myself also run the RSS/IUGR support group for the Child Growth Foundation. If you are interested in joining let me know. My e-mail address is: jenny_cgf@h... > Where abouts in the UK are you? We are in Sutton Coldfield. > Best wishes > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Hi , Thanks for your message. I contacted the CGF and they are sending me a membership pack, so I guess you will soon be hearing from me through there. We are in London - currently in Wimbledon, but hoping to move to Kingston upon Thames later this year. Will be in touch soon, Thanks Rae > Hello Rae > There are a few of us from the UK > I have a daughter Georgia who is 5 years old. She was diagnosed with RSS when she was 14 months so you were very 'lucky' to have such an early diagnosis. > Georgia is now doing incredibly well. She started growth hormone Feb 2001. She then weighed around 8kg and was about 78cm. She had her six month check on Friday and she now weighs 13.5kg and is 98cm. > I don't know whether you know of the Child Growth Foundation. I am the membership secretary and my husband Nick and myself also run the RSS/IUGR support group for the Child Growth Foundation. If you are interested in joining let me know. My e-mail address is: jenny_cgf@h... > Where abouts in the UK are you? We are in Sutton Coldfield. > Best wishes > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 He is so cute! thanks for sharing allyn McLaughlin teresam@...> wrote: Introducing I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfSYC8F&.dir=/\ 92c2&.src=ph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 , He's just beautiful! Such a sweet little babe. Congratulations to you and your family. Welcome to the world !! Kori Mama of Kenton 6/98 Merek 3/00 Darbi 3/03 - Rt. CF - DBB 12hr/day (¨`·.·´¨) `·.¸(¨`·.·´¨) `·.¸.·´ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 M., Thanks for sharing! What a handsome, healthy looking, adorable boy! He also has a beautiful name. I hope you are feeling well and that everyone is doing fine. Congratulations! I'm so happy for you.. and Claire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 , He is an absolute doll! Congrats! Pam and (8-12-01) > Introducing > I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. > > > http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfSY C8F&.dir=/92c2&.src=ph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 , Congrats on your new handsome bundle of joy and straight feet. Christi McLaughlin teresam@...> wrote: Introducing I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfSYC8F&.dir=/\ 92c2&.src=ph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi , Congratulations! is adorable Marilouise 9/9/03, LCF, cast #6/2nd series Owen and 3/20/99 > Introducing > I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. > > > http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfS YC8F&.dir=/92c2&.src=ph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi , Congratulations! is adorable Marilouise 9/9/03, LCF, cast #6/2nd series Owen and 3/20/99 > Introducing > I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. > > > http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfS YC8F&.dir=/92c2&.src=ph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi , Congratulations! is adorable Marilouise 9/9/03, LCF, cast #6/2nd series Owen and 3/20/99 > Introducing > I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. > > > http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfS YC8F&.dir=/92c2&.src=ph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Very handsome and congratulations to you and your family!!! Charity and Trenton (8-24-00) Introducing Introducing I just thought I'd take a quick minute and put up a couple pictures of . Now that we're home, we're trying to get settled into some semblance of a routine - which will change yet again next week when Jakob goes back to school. http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfSYC8F http://f1.pg.photos.yahoo.com/ph/tsmclaughlin/album?.tok=ph_f3lBB0wfSYC8F&. dir=/92c2&.src=ph> &.dir=/92c2&.src=ph Quote Link to comment Share on other sites More sharing options...
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