Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 I can't address that specifically since we are just beginning to try to get our child home from Korea. However, when DS was diagnosed with autism it was pretty similar. My son would wave things in his eyes and make a goofy noise....DH, that's normal! HUH??? However, he has come around and is a wonderful advocate. I hope things get easier for you. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi , I understand what you are going through. My husband isn't quite as bad but he was definitely in denial in the beginning. I too knew something was wrong at 19 wks gestation. Coby is a twin and he and his sister were measuring about 1 month apart in size at that point. We knew something was wrong but no one could tell us exactly what was going on. If I heard from one more person that all twins weren't the same size I was going to scream. As much as I wanted to hear people say that everything was going to be ok, it made me that mad that they weren't taking it seriously. When I had Coby everyone got a big dose of reality. He weighed just 2 lbs. No one in my family had ever seen a baby that small, but once he started holding his head up they once again went back to " THEIR " comfort zone. " He was a little small but nothing to worry about, " they would always say. That was my family, but not my mom, she supported me 100% and my hubby about 85%. My family had a tendency to make me feel like I was seeking attention for taking Coby to all the doc appointments. Then it got such a routine that no one bothered to so much as call when Coby would go in the hospital for surgery after surgery. Last summer my hubby went to the MAGIC convention. WOW! What a difference that made. He got to see other kids and talk with other dads. Suddenly he saw how Coby and our family fit into this world of RSS. He was amazed by the children. Not only how they looked like Coby but how they had a lot of the same personality traits. He got to see other twins that were as different as ours. It was wonderful and he plans to continue going back every year. I also included Coby's Walk for MAGIC in with his b-day party this year so that the family HAD to get involved. It was great for them to see perfect strangers were interested in helping Coby, so maybe they should be too. I really believe men and woman are programmed different. Men process situations differently then we do. I think that as long as they believe everything is ok and that nothing is wrong, then it will be true. I know with my husband he would always say, " Coby is perfect just the way he is " and he was right, but Coby still needed special attention to medical issues as well. I can't tell you what will help. I can only tell you that you have to keep doing what is best for Autumn and hope that at some point your husband will appreciate what you are doing for your daughter. Although, I bet that he already does and just doesn't know how to express it. Take care and good luck, le, wife to & mom to: Shye almost 10, Brock almost 8, and Coby (rss) & Carlee NOW 2!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 When Destiny's pediatrician first suspected RSS and I was running around all over the place for tests and early intervention and reading everything I could get my hands on and posting reams of questions to the group, my older daughter (now 28) told me I was " obsessed " and that she was sick of hearing about RSS and that if I kept it up I would end up giving Destiny (now 5) seroius emotional issues. Well I suppose i was obsessed, I needed to be at the time, my one year old weighed 11 1/2 lbs, 21 1/2 in. I didn't stop being obsessed I think until it became clear that early intervention had very little to offer her once she was walking and we learned how to feed her. Fortunately she has one of the more mild scenarios. There are other neurological issues that are non RSS related that we are facing now, but even though those are potentially more serious, I am less obsessed. I think having been through the initial shock of finding out that I had an atypical child and dealing with it has helped me gain perspective. I concentrate more on her assests now than her limitations. She can speak for herself and that she can articulate her experience of life helps me a lot. At this point RSS is just a fact like her blue eyes. The older she gets the clearer it becomes that even if she is very short or ends up in a wheelchair, her bright spirit, her loving heart and her brilliant mind will allow her to enjoy a full and rich life. And now that I can look back I realize that my grown daughter was right, I WAS obsessed, and driving everybody around me to distraction with my fears about Destiny's future. If I had continued like that, my RSS daughter would probably be a mess by now. At the time I couldn't see it and it was exactly what I needed to do in order to feel in control of the situation. I couldn't have reacted any other way. And my older daughter couldn't have reacted any other way than she did, trying to minimze the impacted of the diagnosis and to find a way for everything to be as close to normal as possible. It was just who she is. Your husband sounds like he may be a similar sort of person.Perhaps everything in one way IS just fine. Maybe he is acting this way in a sort of misguided attempt to make you feel better.People say things like " maybe she'll have a growth spurt and surprise you " to make you feel better, to give you hope. Maybe the two of you are a really good team. While you are gathering information and focusing on managing the " what's wrong " part of the picture he's maintaining as much normalcy as possible and focusing on the " what's right " part. My daughter ended up helping me keep food diaries and made sure she Destiny got extra snacks whils she was my primary sitter when her sister was little.She also set an example for me in not letting her sister use her size or fake hunger and fatigue attacks to get out of picking up her toys, (I was a real patsy for this tactic). I think if you just respect each other's strengths you'll end up meeting in the middle after a little time goes by and the whole RSS thing becomes routine. It's really hard in the beginning but I'm here to tell you it gets better. I just really don't worry much anymore. Anyway, I just wanted you to know that I've been where you are. mom to Destiny 5years 9months 37lbs 42in RSS, clonus, ? and a host of others --- -- Original Message ----- From: anderkat3 To: RSS-Support Sent: Monday, October 25, 2004 8:10 PM Subject: Unsupportive Husband Hi everyone. I just need some advice on how to handle my husband. He has not been supportive of the diagnosis of my 9 month old daughter Autumn with RSS. He thinks she is " just small " (24 1/2 inches 12lbs 15 oz) and does not seem to realize how important it is to do what I do for her. He basically just sits back as I run ragged from doctor to doctor, keep food diaries, cry over how she just doesn't eat enough, wake up throughout the night and try to sneak in some pediasure, deal with all the docs giving me the same advice over and over(to get her to eat more) and trying to get them to understand it's not working, trying to get her prealbumin level back up...etc. He says he is not in denial, he just thinks everything is just fine, and it is not. I feel like I am by myself with this and regardless of what I tell him or explain to him. It doesnt' seem to matter to him what a group of geneticists at Children's Hospital says, and I just don't know what to say anymore. Has anyone else dealt with this? It has been 2 months that we first heard the words Silver Syndrome and he still feels the same. I try to tell him that denial doesn't change the reality in front of him, but it just doesn't seem to matter. I have been concerned with her since 2 months before I had her when she stopped growing up until know, and I am constantly told I need to quit worrying and everything is fine. I am so frustrated. Also, does any one else get family members or friends making comments like " so and so was small and she doesn't have RSS " or " I don't see the low set ears or downturned mouth so why do they think she has it? " or " It's funny,I don't see all the features of RSS on her, hmmm " (from the ones playing doctor from what they read on the internet). I have just had enough and I just don't know what to say to anyone anymore! They are curious as to why she is so small adn I tell them, and then later on that's the stuff I hear. Is it just me or is anyone else going through it and what do you think I should do to handle this, because I am at my wits end! Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 , I know what you are going thought, my hubby, loves and adores our three kids, but when it came to Gaby, he could not aknowledge ohant something was wrong. One day we had a big feight over Gaby and I told him that he would be takeing Gaby to the doctor on her next visit. when he did by himself, he change like you could not belive it. I friend of our, how has a child with down syndrome, told me that men find it very hard to except that something is wrong with their children, and like always women take charge and do what ever has to be done to get the best care for our kids, not that they don't care. She is the one how told me to send to the doctor by himself. And yes I also got the we have small family in our family and she looks they so and so. You just have to have a deafs ear and do what ever you have to do for daughter. The first month had hard, but just ask God for some and help and patience, you husband will come around. I wish you luck, stella mom of Amani 7 yrs non-rss, andres 5 yrs non-rss and Gaby RSS > > Hi everyone. I just need some advice on how to handle my husband. > He has not been supportive of the diagnosis of my 9 month old > daughter Autumn with RSS. He thinks she is " just small " (24 1/2 > inches 12lbs 15 oz) and does not seem to realize how important it is > to do what I do for her. He basically just sits back as I run ragged > from doctor to doctor, keep food diaries, cry over how she just > doesn't eat enough, wake up throughout the night and try to sneak in > some pediasure, deal with all the docs giving me the same advice over > and over(to get her to eat more) and trying to get them to understand > it's not working, trying to get her prealbumin level back up...etc. > He says he is not in denial, he just thinks everything is just fine, > and it is not. I feel like I am by myself with this and regardless > of what I tell him or explain to him. It doesnt' seem to matter to > him what a group of geneticists at Children's Hospital says, and I > just don't know what to say anymore. Has anyone else dealt with > this? It has been 2 months that we first heard the words > Silver Syndrome and he still feels the same. I try to tell him that > denial doesn't change the reality in front of him, but it just > doesn't seem to matter. I have been concerned with her since 2 months > before I had her when she stopped growing up until know, and I am > constantly told I need to quit worrying and everything is fine. I am > so frustrated. Also, does any one else get family members or friends > making comments like " so and so was small and she doesn't have RSS " > or " I don't see the low set ears or downturned mouth so why do they > think she has it? " or " It's funny,I don't see all the features of RSS > on her, hmmm " (from the ones playing doctor from what they read on > the internet). I have just had enough and I just don't know what to > say to anyone anymore! They are curious as to why she is so small adn > I tell them, and then later on that's the stuff I hear. Is it just > me or is anyone else going through it and what do you think I should > do to handle this, because I am at my wits end! > > > Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 , I completely understand what you are going through, Datreon's father and his family just refused to face that something was wrong with our baby, they would say that he is just small and that he would catch up. They thought that it was ridiculous that I was spending so much time having him in therapy, but I just kept on telling them that he has RSS, and they just need to face the facts! They needed to help me take care of him instead of fighting me on how I do it. Slowly, they are watching what they say around me, but I wish I could give you advise, but I'm going through the same thing. Ya know, I don't think that his father has ever even said RSS. le, mom to Datreon RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Oh I am so sorry to hear what you are dealing with on top of having to take care of your daughter. Believe me I know how you feel. 's pediatrician had her seen by a GI and a few other things. The doctor then said she is just going to be small. Last year as we were getting ready for to have open heart surgery she was seen by a geneticist at the request of her cardiologist. My husband did not go to the appt with me and that's where I got the diagnosis. He looks it up online and says I don't think she has that. On top of which my mother in law keeps saying well I'm small and so and so is small maybe we have it. Then he comes with me to her 4 year well visit and we discuss the geneticist report and the ped is now thinking yeah okay and sends us to an endo. My husband came to the endo visit in February and heard the words himself plus the SGA. Now he believes it and it was from that point that I was doing some research and he was telling me that okay but you don't need to go overboard. Then I found this group and Magic Foundation and since then he takes on the seriousness of everything and actually happy that I have learned so much because we sit back and think of all the times she was sick or not eating and it all makes sense so I know he is even happier that I have educated myself more so that when we go to doctor visits or make calls to doctors we have some knowledge of what the conversation is about other than our daughter's name. Now back to my mother-in-law just a few weeks ago she showed my husband a picture of herself when she was 7 and see how small she was and he told me that he just actually raised his voice and said you don't get it she has it. My mother-in-law would tell me how small she was or how small my husband was (he was skinny with long arms and legs) and better yet that the one granddaughter was small just like (not putting anyone down but she's adopted no genetict or blood connection). But look at her she looked like that and she grew up fine. Then obviously she didn't have that. She did have fetal alcohol syndrome and was beaten at 3 months old and put in the hospital for 3 months. I think if you get your husband to go to an endo visit with you and he hears it from them it may help a little. I also showed the photos posted to my husband and he really got interested in the group and when I talk about what each other is going through. I know when I first took to the cardiologist when she was 3 1/2 he didn't go because the attitude from the ped was like its a murmur and I was blown away to hear that she needed surgery. To this day I know my husband doesn't forgive himself for not going. Who knew we were going to hear such a thing so now when its anything but a ped visit he goes because he's afraid if he doesn't it will be something bad. And that helps because then he can't think I heard it wrong or that I'm blowing something up. If you want to discuss this more you can e-mail me privately at jenn-omd@... (that's my work e-mail) or this e-mail which I check constantly. Last night had a fever and he always worried about both kids when they are sick but now that he understands the consequences are greater for because of the RSS he worries more - especially when she doesn't eat well at meals. B 4 3/4 RSS/SGA and Kelli 2 NON RSS > > Hi everyone. I just need some advice on how to handle my husband. > He has not been supportive of the diagnosis of my 9 month old > daughter Autumn with RSS. He thinks she is " just small " (24 1/2 > inches 12lbs 15 oz) and does not seem to realize how important it is > to do what I do for her. He basically just sits back as I run ragged > from doctor to doctor, keep food diaries, cry over how she just > doesn't eat enough, wake up throughout the night and try to sneak in > some pediasure, deal with all the docs giving me the same advice over > and over(to get her to eat more) and trying to get them to understand > it's not working, trying to get her prealbumin level back up...etc. > He says he is not in denial, he just thinks everything is just fine, > and it is not. I feel like I am by myself with this and regardless > of what I tell him or explain to him. It doesnt' seem to matter to > him what a group of geneticists at Children's Hospital says, and I > just don't know what to say anymore. Has anyone else dealt with > this? It has been 2 months that we first heard the words > Silver Syndrome and he still feels the same. I try to tell him that > denial doesn't change the reality in front of him, but it just > doesn't seem to matter. I have been concerned with her since 2 months > before I had her when she stopped growing up until know, and I am > constantly told I need to quit worrying and everything is fine. I am > so frustrated. Also, does any one else get family members or friends > making comments like " so and so was small and she doesn't have RSS " > or " I don't see the low set ears or downturned mouth so why do they > think she has it? " or " It's funny,I don't see all the features of RSS > on her, hmmm " (from the ones playing doctor from what they read on > the internet). I have just had enough and I just don't know what to > say to anyone anymore! They are curious as to why she is so small adn > I tell them, and then later on that's the stuff I hear. Is it just > me or is anyone else going through it and what do you think I should > do to handle this, because I am at my wits end! > > > Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 That was great that you put it so the family had to get involved. Another thing I wanted to add to my reply is that as Autumn gets older he will see that really she isn't growing like other kids and it may kick in then. Also that's when you understand mother's intuition. le I know how you feel about always going to the doctor, I was always going with and the girl I work with her daughter is a year older and wasn't going as much even though she was in daycare. I thought I was just a nervous mom but everytime I went they said it was a viral infection or something. Sometimes I often wondered if my friends, family or others viewed me as having a little Munchousen (sic) disease you know where the mom looks for the kid to be sick. Now everyone looks back and understands including myself and I'm glad I have done what I have. B > > Hi , > > I understand what you are going through. My husband isn't quite as > bad but he was definitely in denial in the beginning. I too knew > something was wrong at 19 wks gestation. Coby is a twin and he and > his sister were measuring about 1 month apart in size at that point. > We knew something was wrong but no one could tell us exactly what was > going on. If I heard from one more person that all twins weren't the > same size I was going to scream. As much as I wanted to hear people > say that everything was going to be ok, it made me that mad that they > weren't taking it seriously. > > When I had Coby everyone got a big dose of reality. He weighed just > 2 lbs. No one in my family had ever seen a baby that small, but once > he started holding his head up they once again went back to " THEIR " > comfort zone. " He was a little small but nothing to worry about, " > they would always say. That was my family, but not my mom, she > supported me 100% and my hubby about 85%. My family had a tendency > to make me feel like I was seeking attention for taking Coby to all > the doc appointments. Then it got such a routine that no one > bothered to so much as call when Coby would go in the hospital for > surgery after surgery. > > Last summer my hubby went to the MAGIC convention. WOW! What a > difference that made. He got to see other kids and talk with other > dads. Suddenly he saw how Coby and our family fit into this world of > RSS. He was amazed by the children. Not only how they looked like > Coby but how they had a lot of the same personality traits. He got > to see other twins that were as different as ours. It was wonderful > and he plans to continue going back every year. I also included > Coby's Walk for MAGIC in with his b-day party this year so that the > family HAD to get involved. It was great for them to see perfect > strangers were interested in helping Coby, so maybe they should be > too. > > I really believe men and woman are programmed different. Men process > situations differently then we do. I think that as long as they > believe everything is ok and that nothing is wrong, then it will be > true. I know with my husband he would always say, " Coby is perfect > just the way he is " and he was right, but Coby still needed special > attention to medical issues as well. > > I can't tell you what will help. I can only tell you that you have > to keep doing what is best for Autumn and hope that at some point > your husband will appreciate what you are doing for your daughter. > Although, I bet that he already does and just doesn't know how to > express it. > > Take care and good luck, > le, wife to & mom to: > Shye almost 10, Brock almost 8, and Coby (rss) & Carlee NOW 2!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 hi, i am proud to report my hubbie was always very supportive in all of this, he is jacob step-father and we met when jacob was about a year it never faized him that we were always at the doctors he did alot of the looking for infomation and still does i think it confort him to see it all in the papers where i need people to talk to about it he need documation on it. now family is a different story they always want me to just feed him more or something it is not until jacob was a bout five they started to see he was not going to catch up on his own and he was different. it just takes time people have to get there own confort zone some accept it for was it is andd others have to be faced with a lot longer to get with it don't give up keep it up you know what is right and i am sure he will get there too in his own time for families no one want there loved one to be different so they just don't look at it that way cara mom to jacob p.s. we would not change jacob for anything thought he is who he is everyone is different anderkat3 wrote: Hi everyone. I just need some advice on how to handle my husband. He has not been supportive of the diagnosis of my 9 month old daughter Autumn with RSS. He thinks she is " just small " (24 1/2 inches 12lbs 15 oz) and does not seem to realize how important it is to do what I do for her. He basically just sits back as I run ragged from doctor to doctor, keep food diaries, cry over how she just doesn't eat enough, wake up throughout the night and try to sneak in some pediasure, deal with all the docs giving me the same advice over and over(to get her to eat more) and trying to get them to understand it's not working, trying to get her prealbumin level back up...etc. He says he is not in denial, he just thinks everything is just fine, and it is not. I feel like I am by myself with this and regardless of what I tell him or explain to him. It doesnt' seem to matter to him what a group of geneticists at Children's Hospital says, and I just don't know what to say anymore. Has anyone else dealt with this? It has been 2 months that we first heard the words Silver Syndrome and he still feels the same. I try to tell him that denial doesn't change the reality in front of him, but it just doesn't seem to matter. I have been concerned with her since 2 months before I had her when she stopped growing up until know, and I am constantly told I need to quit worrying and everything is fine. I am so frustrated. Also, does any one else get family members or friends making comments like " so and so was small and she doesn't have RSS " or " I don't see the low set ears or downturned mouth so why do they think she has it? " or " It's funny,I don't see all the features of RSS on her, hmmm " (from the ones playing doctor from what they read on the internet). I have just had enough and I just don't know what to say to anyone anymore! They are curious as to why she is so small adn I tell them, and then later on that's the stuff I hear. Is it just me or is anyone else going through it and what do you think I should do to handle this, because I am at my wits end! Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 hi katherine!! i feel for you!! luckly my hubby is supportive, but in the beginning he also hought i worried to much, even now sometimes when i get frustrated because christopher isnt really eating well and i worry about his weight he says not to. but he is that way with everything, i am the worrier on the outside and he worries on the inside (doesnt always show his emotions) but once he got to talk to other parents and actually see other rss kids he relized that christopher was just like them!! no one whats to believe that their precious child may have something " wrong " with them and unfortunatly everyone handles this differently. have you shown your husband any of the pics of the kids on our list? also i have the same problem with family members as well, i have aunts, uncles and cousins that think he is going to suprise us and be 6' one day!!! they dont understand, but after we went to convention this year and then showed them pics from the convention of christopher with other kids they could " see " it. we tell them all the time that we have accepted the fact that god gave us a special child and that they need to accept it as well!! try not to let it get to you, even though it is very easy to(believe me i know), you are doing the best job possible for your child!! atleast you have the dr. agreeing with the rss dx, there are alot of families that cant even get their dr to agree on a dx. when ever you are feeling frustrated just vent here on the list and we will listen thats what we are here for!!! we have all been through it and will cont to be!! or sometimes i just go for a walk, by myself to clear my head!! good luck!! jodie c. > > Hi everyone. I just need some advice on how to handle my husband. > He has not been supportive of the diagnosis of my 9 month old > daughter Autumn with RSS. He thinks she is " just small " (24 1/2 > inches 12lbs 15 oz) and does not seem to realize how important it is > to do what I do for her. He basically just sits back as I run ragged > from doctor to doctor, keep food diaries, cry over how she just > doesn't eat enough, wake up throughout the night and try to sneak in > some pediasure, deal with all the docs giving me the same advice over > and over(to get her to eat more) and trying to get them to understand > it's not working, trying to get her prealbumin level back up...etc. > He says he is not in denial, he just thinks everything is just fine, > and it is not. I feel like I am by myself with this and regardless > of what I tell him or explain to him. It doesnt' seem to matter to > him what a group of geneticists at Children's Hospital says, and I > just don't know what to say anymore. Has anyone else dealt with > this? It has been 2 months that we first heard the words > Silver Syndrome and he still feels the same. I try to tell him that > denial doesn't change the reality in front of him, but it just > doesn't seem to matter. I have been concerned with her since 2 months > before I had her when she stopped growing up until know, and I am > constantly told I need to quit worrying and everything is fine. I am > so frustrated. Also, does any one else get family members or friends > making comments like " so and so was small and she doesn't have RSS " > or " I don't see the low set ears or downturned mouth so why do they > think she has it? " or " It's funny,I don't see all the features of RSS > on her, hmmm " (from the ones playing doctor from what they read on > the internet). I have just had enough and I just don't know what to > say to anyone anymore! They are curious as to why she is so small adn > I tell them, and then later on that's the stuff I hear. Is it just > me or is anyone else going through it and what do you think I should > do to handle this, because I am at my wits end! > > > Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 - What everyone has written is so true. What you are experiencing is VERY common for ANY medical condition. In fact, MAGIC was asked if we could do a " Dad's Only " session at next year's convention. There is a middle ground for everyone. The fact is that you are probably more hurried and stressed BECAUSE he seems not to care. I know for myself that about 6 months ago, my husband used to never help me in the mornings with the kids. He would sit and eat his breakfast. I got madder and madder because I was so resentful towards him. After talking about it with the counselor, it is so much better now. I realized that about 75% of my stress was the undercurrent of being resentful at him! Almost all families end up with one parent assuming the vast majority of the medical care work. Most of the time it seems to be the mom, but not always. And men do process information differently. Remember the old adage that men want to " fix " things. Imagine being your husband. His precious daughter, the light of his world, has a problem that HE CAN NOT FIX. And I am guessing that the " fear of the unknown " is frightening for him (whether he can admit that or not). Others are right. The convention makes a huge difference because suddenly it is " real " but " not so bad. " You see older kids running, and swimming and having a ball. But you also listen to the presentations about the risks and what you should do for prevention and optimal growth. Suddenly, you don't need to be in denial because it isn't so scary, but it is real. So for now, unless your husband is actually CONTRADICTING you, I would leave it alone. If he just doesn't want to deal, you have to own being her advocate. You can ask him for extra help around the house on weeks that you have more doctor's appts. Steve and I will sit down on a Sunday night and map out the week -- Steve, I can't cook these couple of nights, laundry can't get done until Friday unless you want to throw loads in, etc. Now, for the relatives. This is a hard thing to do but you will just have to ignore them. Nothing bugged me more when L was little than " well, my aunt was small like but she ended up growing up just fine. " Depending on the situation, you can either ignore it, or say " Autumn's disorder means that she would be about 4'7 " as an adult, which as you may know is almost 11 inches shorter for a woman in her generation. " If an adult goes off about Grandma being 4'11 " tall and doing just fine, ignore it or say this: " I agree - but don't forget that for Grandma's generation, the average female height was 5'0 " tall (that is my Grandma's generation); for my mother's generation the average height was 5'2 " , for our generation the average height is 5'4 " and they are guessing that for our daughter's, the average girl's height may increase to 5'6 " , but 5'4 " definitely. So Autumn, if she is 4'7 " tall, would be signficantly shorter than her peers. " If someone says " give her to me, I'll fatten her up. " Grin, and say " here you go, that would be great! " and watch their face. Or you can say " well, kids with RSS struggle with weight gain for a variety of reason. " OH, I feel for you and wish you the best. Salem > > Hi everyone. I just need some advice on how to handle my husband. > He has not been supportive of the diagnosis of my 9 month old > daughter Autumn with RSS. He thinks she is " just small " (24 1/2 > inches 12lbs 15 oz) and does not seem to realize how important it is > to do what I do for her. He basically just sits back as I run ragged > from doctor to doctor, keep food diaries, cry over how she just > doesn't eat enough, wake up throughout the night and try to sneak in > some pediasure, deal with all the docs giving me the same advice over > and over(to get her to eat more) and trying to get them to understand > it's not working, trying to get her prealbumin level back up...etc. > He says he is not in denial, he just thinks everything is just fine, > and it is not. I feel like I am by myself with this and regardless > of what I tell him or explain to him. It doesnt' seem to matter to > him what a group of geneticists at Children's Hospital says, and I > just don't know what to say anymore. Has anyone else dealt with > this? It has been 2 months that we first heard the words > Silver Syndrome and he still feels the same. I try to tell him that > denial doesn't change the reality in front of him, but it just > doesn't seem to matter. I have been concerned with her since 2 months > before I had her when she stopped growing up until know, and I am > constantly told I need to quit worrying and everything is fine. I am > so frustrated. Also, does any one else get family members or friends > making comments like " so and so was small and she doesn't have RSS " > or " I don't see the low set ears or downturned mouth so why do they > think she has it? " or " It's funny,I don't see all the features of RSS > on her, hmmm " (from the ones playing doctor from what they read on > the internet). I have just had enough and I just don't know what to > say to anyone anymore! They are curious as to why she is so small adn > I tell them, and then later on that's the stuff I hear. Is it just > me or is anyone else going through it and what do you think I should > do to handle this, because I am at my wits end! > > > Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Hi , Oh how I wish you were around 3 1/2 years ago when I went through the same thing. It was extremely frustrating. My husband was in complete DENIAL. All he said was " there's nothing wrong with him, he'll eat when he's ready " . Can you imagine - a newborn will eat when he's ready. Being a nurse I know that the first year of life is crucial when it comes to eating and this my son just didn't do. He would only take 1-2 ounces from his bottle each feed. I kept a log of all his feeds and had my mother do it too when she babysat. I still have the logs to this day. There were many days where my son would only take about 10 ounces for the entire day. Of course his pediatrician wasn't pleased and sometimes I sensed that he thought I was neglecting my child and just not feeding him. Afterall most babies have no trouble drinking 4-8 ounces of formula at every feed so mom must be doing something wrong- Right? I also had family and friends say " well you and your husband are short/small so you can't expect him to be big. " Can you believe this reasoning. Granted, my son may not reach 6 ft. because both myself and my husband are short but in the first few years of life he should at least be on the curve. I am only 5' 1 " but in the first few years of life I was on the curve. I see alot of Mexican women where I work and they are VERY short. Even I am towering over them and yet when they have children they are big and healthy looking and are definitely on the curve. So if you take the view of my family and friends, then the Mexican women's children should not be on the curve at all either. Which is nonsense. Sorry for rambling so much but this irks me so much. Even when we had our first appt. with DR. H she sensed that my husband was in denial also because he felt this was something that would last about a year or so. He was against any type of surgery so my son had a NG tube for 8-9 months. You know who was stuck inserting it every 2 weeks right? Even when my son Jordan finally started GH my husband refused to give him the injections. He does it now but I tell you I am suprised we are still together. We had a rough 3 years together. Just to let you know it does get better and easier just try to hang in there. I've been there and so has everyone else. mom to Jordan 3yrs 10 months, 31 lbs, 38.5 inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 , To some extent I know exactly how you feel. Aubrey's " father " and I seperated when she was around six months old mainly because she had alot of health problems and instead of dealing with them he turned to alcohol and drugs. Anyways now he does not come to see her, call her, pay child support, anything. Well anyway practically my whole family(who rarely ever goes to doc appts) is totally against the idea that aubrey has growing problems. They are always telling me how i need to give her time to catch up and also the one you mentioned about surprisine us and being 6 feet tall. Well anyway now that she's starting GHT i am really catching alot of static over it. Even to a few of the family member sinning against god because " if he wanted her to be tall, he would have done it himself " . GHT apparently ranked up there with cloning to a few of them. So basically i am left being my own support system. I can definately relate to how hard it is on you tonya mom to aubrey 27wkr.1#3oz cara schobert wrote: hi, i am proud to report my hubbie was always very supportive in all of this, he is jacob step-father and we met when jacob was about a year it never faized him that we were always at the doctors he did alot of the looking for infomation and still does i think it confort him to see it all in the papers where i need people to talk to about it he need documation on it. now family is a different story they always want me to just feed him more or something it is not until jacob was a bout five they started to see he was not going to catch up on his own and he was different. it just takes time people have to get there own confort zone some accept it for was it is andd others have to be faced with a lot longer to get with it don't give up keep it up you know what is right and i am sure he will get there too in his own time for families no one want there loved one to be different so they just don't look at it that way cara mom to jacob p.s. we would not change jacob for anything thought he is who he is everyone is different anderkat3 wrote: Hi everyone. I just need some advice on how to handle my husband. He has not been supportive of the diagnosis of my 9 month old daughter Autumn with RSS. He thinks she is " just small " (24 1/2 inches 12lbs 15 oz) and does not seem to realize how important it is to do what I do for her. He basically just sits back as I run ragged from doctor to doctor, keep food diaries, cry over how she just doesn't eat enough, wake up throughout the night and try to sneak in some pediasure, deal with all the docs giving me the same advice over and over(to get her to eat more) and trying to get them to understand it's not working, trying to get her prealbumin level back up...etc. He says he is not in denial, he just thinks everything is just fine, and it is not. I feel like I am by myself with this and regardless of what I tell him or explain to him. It doesnt' seem to matter to him what a group of geneticists at Children's Hospital says, and I just don't know what to say anymore. Has anyone else dealt with this? It has been 2 months that we first heard the words Silver Syndrome and he still feels the same. I try to tell him that denial doesn't change the reality in front of him, but it just doesn't seem to matter. I have been concerned with her since 2 months before I had her when she stopped growing up until know, and I am constantly told I need to quit worrying and everything is fine. I am so frustrated. Also, does any one else get family members or friends making comments like " so and so was small and she doesn't have RSS " or " I don't see the low set ears or downturned mouth so why do they think she has it? " or " It's funny,I don't see all the features of RSS on her, hmmm " (from the ones playing doctor from what they read on the internet). I have just had enough and I just don't know what to say to anyone anymore! They are curious as to why she is so small adn I tell them, and then later on that's the stuff I hear. Is it just me or is anyone else going through it and what do you think I should do to handle this, because I am at my wits end! Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Hi. I get similar responses. Although I am 5 3 1/2 and my husband is 6 foot 1, my mom comes from a smaller family and she is 5 ft. I am told " well, there are small people on your side of the family, she's just taking after them " The thing is, like you said, even short stature starts off like every other baby because that is the " baby phase " . They are born bigger(most of the time) chunkier, eat well, grow well and are on the chart until later on when the short stature takes over the baby phase, unlike our kids. I have also heard " you are a picky eater, so is she " but they don't realize she actually has to eat in order to be picky and this goes way beyond that! It's so hard when there is no support or understanding and constant contridictions. Sorry you had to go through it too. Thanks for the support mom to Autumn > Hi , > > Oh how I wish you were around 3 1/2 years ago when I went through the same > thing. It was extremely frustrating. My husband was in complete DENIAL. All he > said was " there's nothing wrong with him, he'll eat when he's ready " . Can you > imagine - a newborn will eat when he's ready. Being a nurse I know that the > first year of life is crucial when it comes to eating and this my son just > didn't do. He would only take 1-2 ounces from his bottle each feed. I kept a log > of all his feeds and had my mother do it too when she babysat. I still have > the logs to this day. There were many days where my son would only take about 10 > ounces for the entire day. Of course his pediatrician wasn't pleased and > sometimes I sensed that he thought I was neglecting my child and just not feeding > him. Afterall most babies have no trouble drinking 4-8 ounces of formula at > every feed so mom must be doing something wrong- Right? I also had family and > friends say " well you and your husband are short/small so you can't expect him > to be big. " Can you believe this reasoning. Granted, my son may not reach 6 > ft. because both myself and my husband are short but in the first few years > of life he should at least be on the curve. I am only 5' 1 " but in the first > few years of life I was on the curve. I see alot of Mexican women where I work > and they are VERY short. Even I am towering over them and yet when they have > children they are big and healthy looking and are definitely on the curve. > So if you take the view of my family and friends, then the Mexican women's > children should not be on the curve at all either. Which is nonsense. Sorry for > rambling so much but this irks me so much. Even when we had our first appt. > with DR. H she sensed that my husband was in denial also because he felt this > was something that would last about a year or so. He was against any type of > surgery so my son had a NG tube for 8-9 months. You know who was stuck > inserting it every 2 weeks right? Even when my son Jordan finally started GH my > husband refused to give him the injections. He does it now but I tell you I am > suprised we are still together. We had a rough 3 years together. Just to let > you know it does get better and easier just try to hang in there. I've been > there and so has everyone else. > > mom to Jordan 3yrs 10 months, 31 lbs, 38.5 inches > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Hi Tonya, Sorry to hear what you're going through. It must be really hard having people tell you you are 'sinning' for helping out you daughter! It's as far away from the truth as possible! People just need to quit fighting reality because it's not going anywhere. Keep up the strength and good luck. mom to Autumn > > Hi everyone. I just need some advice on how to handle my husband. > He has not been supportive of the diagnosis of my 9 month old > daughter Autumn with RSS. He thinks she is " just small " (24 1/2 > inches 12lbs 15 oz) and does not seem to realize how important it is > to do what I do for her. He basically just sits back as I run ragged > from doctor to doctor, keep food diaries, cry over how she just > doesn't eat enough, wake up throughout the night and try to sneak in > some pediasure, deal with all the docs giving me the same advice over > and over(to get her to eat more) and trying to get them to understand > it's not working, trying to get her prealbumin level back up...etc. > He says he is not in denial, he just thinks everything is just fine, > and it is not. I feel like I am by myself with this and regardless > of what I tell him or explain to him. It doesnt' seem to matter to > him what a group of geneticists at Children's Hospital says, and I > just don't know what to say anymore. Has anyone else dealt with > this? It has been 2 months that we first heard the words > Silver Syndrome and he still feels the same. I try to tell him that > denial doesn't change the reality in front of him, but it just > doesn't seem to matter. I have been concerned with her since 2 months > before I had her when she stopped growing up until know, and I am > constantly told I need to quit worrying and everything is fine. I am > so frustrated. Also, does any one else get family members or friends > making comments like " so and so was small and she doesn't have RSS " > or " I don't see the low set ears or downturned mouth so why do they > think she has it? " or " It's funny,I don't see all the features of RSS > on her, hmmm " (from the ones playing doctor from what they read on > the internet). I have just had enough and I just don't know what to > say to anyone anymore! They are curious as to why she is so small adn > I tell them, and then later on that's the stuff I hear. Is it just > me or is anyone else going through it and what do you think I should > do to handle this, because I am at my wits end! > > > Mom to Autumn 9 mos and 2 boys > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Thanks that means alot. tonya mom to aubrey 27wkr1#3oz anderkat3 wrote: Hi Tonya, Sorry to hear what you're going through. It must be really hard having people tell you you are 'sinning' for helping out you daughter! It's as far away from the truth as possible! People just need to quit fighting reality because it's not going anywhere. Keep up the strength and good luck. mom to Autumn > > Hi everyone. I just need some advice on how to handle my husband. > He has not been supportive of the diagnosis of my 9 month old > daughter Autumn with RSS. He thinks she is " just small " (24 1/2 > inches 12lbs 15 oz) and does not seem to realize how important it is > to do what I do for her. He basically just sits back as I run ragged > from doctor to doctor, keep food diaries, cry over how she just > doesn't eat enough, wake up throughout the night and try to sneak in > some pediasure, deal with all the docs giving me the same advice over > and over(to get her to eat more) and trying to get them to understand > it's not working, trying to get her prealbumin level back up...etc. > He says he is not in denial, he just thinks everything is just fine, > and it is not. I feel like I am by myself with this and regardless > of what I tell him or explain to him. It doesnt' seem to matter to > him what a group of geneticists at Children's Hospital says, and I > just don't know what to say anymore. Has anyone else dealt with > this? It has been 2 months that we first heard the words > Silver Syndrome and he still feels the same. I try to tell him that > denial doesn't change the reality in front of him, but it just > doesn't seem to matter. I have been concerned with her since 2 months > before I had her when she stopped growing up until know, and I am > constantly told I need to quit worrying and everything is fine. I am > so frustrated. Also, does any one else get family members or friends > making comments like " so and so was small and she doesn't have RSS " > or " I don't see the low set ears or downturned mouth so why do they > think she has it? " or " It's funny,I don't see all the features of RSS > on her, hmmm " (from the ones playing doctor from what they read on > the internet). I have just had enough and I just don't know what to > say to anyone anymore! They are curious as to why she is so small adn > I tell them, and then later on that's the stuff I hear. Is it just > me or is anyone else going through it and what do you think I should > do to handle this, because I am at my wits end! > > > Mom to Autumn 9 mos and 2 boys > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Tonya, My daughter had a similar " father " who was killed in an accident when she was two. We too had separated when she was an infant (two months) because of his inability to live life like an adult. Anyway, that's not really why I'm posting. I just had that " fellow feeling " for you and wanted to say as a parent who has decided NOT to use GHT for my daughter that I want to be part of your support system. If you feel that this is what's best for your child, you should by all means give her the GHT. You are the only person qualified to make that decision, you alone know the intimate specifics of her situation and her personality. Your family may never support you and I'll bet they take antibiotics when they are sick from something that might have killed them 200 years ago, not to mention immunizations etc. Re: Unsupportive Husband , To some extent I know exactly how you feel. Aubrey's " father " and I seperated when she was around six months old mainly because she had alot of health problems and instead of dealing with them he turned to alcohol and drugs. Anyways now he does not come to see her, call her, pay child support, anything. Well anyway practically my whole family(who rarely ever goes to doc appts) is totally against the idea that aubrey has growing problems. They are always telling me how i need to give her time to catch up and also the one you mentioned about surprisine us and being 6 feet tall. Well anyway now that she's starting GHT i am really catching alot of static over it. Even to a few of the family member sinning against god because " if he wanted her to be tall, he would have done it himself " . GHT apparently ranked up there with cloning to a few of them. So basically i am left being my own support system. I can definately relate to how hard it is on you tonya mom to aubrey 27wkr.1#3oz cara schobert wrote: hi, i am proud to report my hubbie was always very supportive in all of this, he is jacob step-father and we met when jacob was about a year it never faized him that we were always at the doctors he did alot of the looking for infomation and still does i think it confort him to see it all in the papers where i need people to talk to about it he need documation on it. now family is a different story they always want me to just feed him more or something it is not until jacob was a bout five they started to see he was not going to catch up on his own and he was different. it just takes time people have to get there own confort zone some accept it for was it is andd others have to be faced with a lot longer to get with it don't give up keep it up you know what is right and i am sure he will get there too in his own time for families no one want there loved one to be different so they just don't look at it that way cara mom to jacob p.s. we would not change jacob for anything thought he is who he is everyone is different anderkat3 wrote: Hi everyone. I just need some advice on how to handle my husband. He has not been supportive of the diagnosis of my 9 month old daughter Autumn with RSS. He thinks she is " just small " (24 1/2 inches 12lbs 15 oz) and does not seem to realize how important it is to do what I do for her. He basically just sits back as I run ragged from doctor to doctor, keep food diaries, cry over how she just doesn't eat enough, wake up throughout the night and try to sneak in some pediasure, deal with all the docs giving me the same advice over and over(to get her to eat more) and trying to get them to understand it's not working, trying to get her prealbumin level back up...etc. He says he is not in denial, he just thinks everything is just fine, and it is not. I feel like I am by myself with this and regardless of what I tell him or explain to him. It doesnt' seem to matter to him what a group of geneticists at Children's Hospital says, and I just don't know what to say anymore. Has anyone else dealt with this? It has been 2 months that we first heard the words Silver Syndrome and he still feels the same. I try to tell him that denial doesn't change the reality in front of him, but it just doesn't seem to matter. I have been concerned with her since 2 months before I had her when she stopped growing up until know, and I am constantly told I need to quit worrying and everything is fine. I am so frustrated. Also, does any one else get family members or friends making comments like " so and so was small and she doesn't have RSS " or " I don't see the low set ears or downturned mouth so why do they think she has it? " or " It's funny,I don't see all the features of RSS on her, hmmm " (from the ones playing doctor from what they read on the internet). I have just had enough and I just don't know what to say to anyone anymore! They are curious as to why she is so small adn I tell them, and then later on that's the stuff I hear. Is it just me or is anyone else going through it and what do you think I should do to handle this, because I am at my wits end! Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2004 Report Share Posted November 6, 2004 Thank you , that truely means a lot. Tonya mom to Aubrey Christensen wrote: Tonya, My daughter had a similar " father " who was killed in an accident when she was two. We too had separated when she was an infant (two months) because of his inability to live life like an adult. Anyway, that's not really why I'm posting. I just had that " fellow feeling " for you and wanted to say as a parent who has decided NOT to use GHT for my daughter that I want to be part of your support system. If you feel that this is what's best for your child, you should by all means give her the GHT. You are the only person qualified to make that decision, you alone know the intimate specifics of her situation and her personality. Your family may never support you and I'll bet they take antibiotics when they are sick from something that might have killed them 200 years ago, not to mention immunizations etc. Re: Unsupportive Husband , To some extent I know exactly how you feel. Aubrey's " father " and I seperated when she was around six months old mainly because she had alot of health problems and instead of dealing with them he turned to alcohol and drugs. Anyways now he does not come to see her, call her, pay child support, anything. Well anyway practically my whole family(who rarely ever goes to doc appts) is totally against the idea that aubrey has growing problems. They are always telling me how i need to give her time to catch up and also the one you mentioned about surprisine us and being 6 feet tall. Well anyway now that she's starting GHT i am really catching alot of static over it. Even to a few of the family member sinning against god because " if he wanted her to be tall, he would have done it himself " . GHT apparently ranked up there with cloning to a few of them. So basically i am left being my own support system. I can definately relate to how hard it is on you tonya mom to aubrey 27wkr.1#3oz cara schobert wrote: hi, i am proud to report my hubbie was always very supportive in all of this, he is jacob step-father and we met when jacob was about a year it never faized him that we were always at the doctors he did alot of the looking for infomation and still does i think it confort him to see it all in the papers where i need people to talk to about it he need documation on it. now family is a different story they always want me to just feed him more or something it is not until jacob was a bout five they started to see he was not going to catch up on his own and he was different. it just takes time people have to get there own confort zone some accept it for was it is andd others have to be faced with a lot longer to get with it don't give up keep it up you know what is right and i am sure he will get there too in his own time for families no one want there loved one to be different so they just don't look at it that way cara mom to jacob p.s. we would not change jacob for anything thought he is who he is everyone is different anderkat3 wrote: Hi everyone. I just need some advice on how to handle my husband. He has not been supportive of the diagnosis of my 9 month old daughter Autumn with RSS. He thinks she is " just small " (24 1/2 inches 12lbs 15 oz) and does not seem to realize how important it is to do what I do for her. He basically just sits back as I run ragged from doctor to doctor, keep food diaries, cry over how she just doesn't eat enough, wake up throughout the night and try to sneak in some pediasure, deal with all the docs giving me the same advice over and over(to get her to eat more) and trying to get them to understand it's not working, trying to get her prealbumin level back up...etc. He says he is not in denial, he just thinks everything is just fine, and it is not. I feel like I am by myself with this and regardless of what I tell him or explain to him. It doesnt' seem to matter to him what a group of geneticists at Children's Hospital says, and I just don't know what to say anymore. Has anyone else dealt with this? It has been 2 months that we first heard the words Silver Syndrome and he still feels the same. I try to tell him that denial doesn't change the reality in front of him, but it just doesn't seem to matter. I have been concerned with her since 2 months before I had her when she stopped growing up until know, and I am constantly told I need to quit worrying and everything is fine. I am so frustrated. Also, does any one else get family members or friends making comments like " so and so was small and she doesn't have RSS " or " I don't see the low set ears or downturned mouth so why do they think she has it? " or " It's funny,I don't see all the features of RSS on her, hmmm " (from the ones playing doctor from what they read on the internet). I have just had enough and I just don't know what to say to anyone anymore! They are curious as to why she is so small adn I tell them, and then later on that's the stuff I hear. Is it just me or is anyone else going through it and what do you think I should do to handle this, because I am at my wits end! Mom to Autumn 9 mos and 2 boys Quote Link to comment Share on other sites More sharing options...
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