Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Just so you know, it is sometimes like that even with the band. It will get better, everything becomes a routine and you don't have to work so hard at remembering what you are doing when, then you start to go back to enjoying your baby. Also be sure to follow exercises with lots of hugs and kisses and happy time, that way you get plenty of joy from your little miracle. CAROLG > I feel like I spend so much time during the day on concentrating on > 's position and exercises that I am not enjoying these sweet > newborn moments like I should. Even when I am feeding him I am > thinking....should I hold him this way or try another way...I have > started stretching the tight side of his neck during feedings becaues > he is relaxed. IT is all good for this head/neck, but I am more > focused on what's wrong with him than taking in the beautiful miracle > that he is. It makes me sad and also makes me want to just get this > helmet so that I am not obsessed with REPO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Just so you know, it is sometimes like that even with the band. It will get better, everything becomes a routine and you don't have to work so hard at remembering what you are doing when, then you start to go back to enjoying your baby. Also be sure to follow exercises with lots of hugs and kisses and happy time, that way you get plenty of joy from your little miracle. CAROLG > I feel like I spend so much time during the day on concentrating on > 's position and exercises that I am not enjoying these sweet > newborn moments like I should. Even when I am feeding him I am > thinking....should I hold him this way or try another way...I have > started stretching the tight side of his neck during feedings becaues > he is relaxed. IT is all good for this head/neck, but I am more > focused on what's wrong with him than taking in the beautiful miracle > that he is. It makes me sad and also makes me want to just get this > helmet so that I am not obsessed with REPO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 I'm sorry to hear you're feeling like this. I remember having similar feelings as well. I wanted to let Hannah use the bouncy seat she LOVED so much and I wanted her to be able to play on the floor lying on her back like other babies! More than anything though, I wanted to be able to leave her peacefully sleeping and not risk waking her up by moving her in the night and then have to try for another half hour to get her back to sleep, lol! For me it was definitely a relief to get her the helmet and relax about her positioning and also have the relief of KNOWING her head was improving instead of just hoping. I also hated how fixated I was on looking at how crooked her head was all the time instead of always being able to just look at her cute face instead! For us though, she was a severe case and I knew repo was not a fix-all, just a temporary meausre to keep it from getting worse. I was thrilled to finally get her in a helmet and know we were working toward getting her rounded, plus it covered her crooked head and brought the focus back to her cute little face! If you're making good progress though, you have to know it's worth it b/c it'll either mean less time in a helmet for him or no helmet at all. Hopefully repo will become more second nature for you as you go along and you won't have to " think " about it so much if you know what I mean. Hang in there! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > I feel like I spend so much time during the day on concentrating on > 's position and exercises that I am not enjoying these sweet > newborn moments like I should. Even when I am feeding him I am > thinking....should I hold him this way or try another way...I have > started stretching the tight side of his neck during feedings becaues > he is relaxed. IT is all good for this head/neck, but I am more > focused on what's wrong with him than taking in the beautiful miracle > that he is. It makes me sad and also makes me want to just get this > helmet so that I am not obsessed with REPO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 I'm sorry to hear you're feeling like this. I remember having similar feelings as well. I wanted to let Hannah use the bouncy seat she LOVED so much and I wanted her to be able to play on the floor lying on her back like other babies! More than anything though, I wanted to be able to leave her peacefully sleeping and not risk waking her up by moving her in the night and then have to try for another half hour to get her back to sleep, lol! For me it was definitely a relief to get her the helmet and relax about her positioning and also have the relief of KNOWING her head was improving instead of just hoping. I also hated how fixated I was on looking at how crooked her head was all the time instead of always being able to just look at her cute face instead! For us though, she was a severe case and I knew repo was not a fix-all, just a temporary meausre to keep it from getting worse. I was thrilled to finally get her in a helmet and know we were working toward getting her rounded, plus it covered her crooked head and brought the focus back to her cute little face! If you're making good progress though, you have to know it's worth it b/c it'll either mean less time in a helmet for him or no helmet at all. Hopefully repo will become more second nature for you as you go along and you won't have to " think " about it so much if you know what I mean. Hang in there! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com > I feel like I spend so much time during the day on concentrating on > 's position and exercises that I am not enjoying these sweet > newborn moments like I should. Even when I am feeding him I am > thinking....should I hold him this way or try another way...I have > started stretching the tight side of his neck during feedings becaues > he is relaxed. IT is all good for this head/neck, but I am more > focused on what's wrong with him than taking in the beautiful miracle > that he is. It makes me sad and also makes me want to just get this > helmet so that I am not obsessed with REPO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 THanks you ladies so much for your insight and experience. This is a great board!!! > > I feel like I spend so much time during the day on concentrating on > > 's position and exercises that I am not enjoying these sweet > > newborn moments like I should. Even when I am feeding him I am > > thinking....should I hold him this way or try another way...I have > > started stretching the tight side of his neck during feedings becaues > > he is relaxed. IT is all good for this head/neck, but I am more > > focused on what's wrong with him than taking in the beautiful miracle > > that he is. It makes me sad and also makes me want to just get this > > helmet so that I am not obsessed with REPO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 THanks you ladies so much for your insight and experience. This is a great board!!! > > I feel like I spend so much time during the day on concentrating on > > 's position and exercises that I am not enjoying these sweet > > newborn moments like I should. Even when I am feeding him I am > > thinking....should I hold him this way or try another way...I have > > started stretching the tight side of his neck during feedings becaues > > he is relaxed. IT is all good for this head/neck, but I am more > > focused on what's wrong with him than taking in the beautiful miracle > > that he is. It makes me sad and also makes me want to just get this > > helmet so that I am not obsessed with REPO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2010 Report Share Posted July 14, 2010 Have you looked at any supplements to help with muscle tone? Creatine, carnitine, magnesium. Dave > > I know it's not the end of the world and I saw it coming for the last couple of months, but we are now almost positive that has Hypotonia. He never showed signs of it before, but over the last year as we have had more and more people try to get him to get strength in his upper torso and trunk it is just either not happening or happening so so so very very slow. > > He is going to to through a battery of tests with the physical therapist next week to confirm, but we both agree with 3 different people work on those groups of muscle we should be seeing more than we are. I don't know a lot about hypotonia so I guess I go back to my place of knowledge the internet and my Autism Friends. > > I am just saddened that he may never be able to do some of the things he needs to do, to become that Autistic Eagle Scout of Newark - well he may still be able to do it, but we may have to pull the Autism card so he gets extra time or modifications - I was so hoping we didn't have to do that. We still may not but it is now a true fear. > > Telling his dad should be fun as he says I am always looking for something to be wrong with our son. I wasn't looking for this, it came to me - it just wasn't making sense that he was not improving or improving very very little after a year of the same stuff. > > So I am sad, we will get through this but it just hurts a litte. > > Sharon > mom to > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2010 Report Share Posted July 14, 2010 Low muscle tone has a lot to do with Hypothyroidism,which can be healed with the iodine protocol.I suggest reading all you can by Dr. Brownstein,join the iodine group for support and read allyou can on this sitenaturalthyroidchoices.comBe Well,AliOn Jul 13, 2010, at 8:08 PM, hyperlexiadaddy wrote:Have you looked at any supplements to help with muscle tone?Creatine, carnitine, magnesium.Dave>> I know it's not the end of the world and I saw it coming for the last couple of months, but we are now almost positive that has Hypotonia. He never showed signs of it before, but over the last year as we have had more and more people try to get him to get strength in his upper torso and trunk it is just either not happening or happening so so so very very slow.> > He is going to to through a battery of tests with the physical therapist next week to confirm, but we both agree with 3 different people work on those groups of muscle we should be seeing more than we are. I don't know a lot about hypotonia so I guess I go back to my place of knowledge the internet and my Autism Friends.> > I am just saddened that he may never be able to do some of the things he needs to do, to become that Autistic Eagle Scout of Newark - well he may still be able to do it, but we may have to pull the Autism card so he gets extra time or modifications - I was so hoping we didn't have to do that. We still may not but it is now a true fear. > > Telling his dad should be fun as he says I am always looking for something to be wrong with our son. I wasn't looking for this, it came to me - it just wasn't making sense that he was not improving or improving very very little after a year of the same stuff.> > So I am sad, we will get through this but it just hurts a litte.> > Sharon> mom to > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2010 Report Share Posted July 15, 2010 Sharon, I am so sorry to hear this. I hope you hear better news soon. - Alyssa > > I know it's not the end of the world and I saw it coming for the last couple of months, but we are now almost positive that has Hypotonia. He never showed signs of it before, but over the last year as we have had more and more people try to get him to get strength in his upper torso and trunk it is just either not happening or happening so so so very very slow. > > He is going to to through a battery of tests with the physical therapist next week to confirm, but we both agree with 3 different people work on those groups of muscle we should be seeing more than we are. I don't know a lot about hypotonia so I guess I go back to my place of knowledge the internet and my Autism Friends. > > I am just saddened that he may never be able to do some of the things he needs to do, to become that Autistic Eagle Scout of Newark - well he may still be able to do it, but we may have to pull the Autism card so he gets extra time or modifications - I was so hoping we didn't have to do that. We still may not but it is now a true fear. > > Telling his dad should be fun as he says I am always looking for something to be wrong with our son. I wasn't looking for this, it came to me - it just wasn't making sense that he was not improving or improving very very little after a year of the same stuff. > > So I am sad, we will get through this but it just hurts a litte. > > Sharon > mom to > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Sharon, I am so sorry. Pat K Re: Kinda Sad Sharon, I am so sorry to hear this. I hope you hear better news soon. - Alyssa > > I know it's not the end of the world and I saw it coming for the last couple of months, but we are now almost positive that has Hypotonia. He never showed signs of it before, but over the last year as we have had more and more people try to get him to get strength in his upper torso and trunk it is just either not happening or happening so so so very very slow. > > He is going to to through a battery of tests with the physical therapist next week to confirm, but we both agree with 3 different people work on those groups of muscle we should be seeing more than we are. I don't know a lot about hypotonia so I guess I go back to my place of knowledge the internet and my Autism Friends. > > I am just saddened that he may never be able to do some of the things he needs to do, to become that Autistic Eagle Scout of Newark - well he may still be able to do it, but we may have to pull the Autism card so he gets extra time or modifications - I was so hoping we didn't have to do that. We still may not but it is now a true fear. > > Telling his dad should be fun as he says I am always looking for something to be wrong with our son. I wasn't looking for this, it came to me - it just wasn't making sense that he was not improving or improving very very little after a year of the same stuff. > > So I am sad, we will get through this but it just hurts a litte. > > Sharon > mom to > Quote Link to comment Share on other sites More sharing options...
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