Guest guest Posted May 30, 1999 Report Share Posted May 30, 1999 I sure wish I could carry around like this. Ever since his surgery he does not like to be held. I think it hurt him at first to be held. He is getting better at tolerating it ( not for very long!) but if he starts crying we just have to lay him down, wrap him up and leave him alone!! Before his surgery I had to carry him all day long and he would cry if I laid him down. I bought one of those slings and just carried him around for the first six weeks. I really miss those days. It is hard when your baby does not want to be held and cuddled. I sure love the times when he does tolerate it. Does anybody have any suggestions to help me with this one? mom to (4 mo) CHarGE and (2 yrs) Hi ! had pain and took a giant backward step after his open heart surgery (age 3 weeks) too. The one thing that we could always do (regardless of whether we could hold him do to tubes, equipment, etc. or he was comfortable being held due to pain) was to caress his head (the part with hair) and he always enjoyed this. He will sometimes rub or brush his own head too now. I think that it took a couple of months or so for him to be comfortable being held much. Good news is that he is a snuggler and very social now so hang in there-just don't let him get away with his own little world all of the time-show him how wonderful it is to interact with you and he will come around-on his own terms of course! Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 1999 Report Share Posted May 30, 1999 we're also found that " brushing " Maeve help her get over not wanting to be held.We use a surgical scrub brush, or a vegetable brush or a Koosh ball. Brush a few times a day, especially before picking him up. Do it all over his body, it really works!! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 1999 Report Share Posted May 30, 1999 - was the same way - really didn't want anyone holding her after she got out of the hospital. (She was only a week old for her first open heart surgery, so she never knew what it was like to be held.) It took a lot of patience! We would hold her for about five minutes at a time - with toys everywhere. We would even hang toys over our faces just to keep her distracted while she got used to being touched! We also tried not to hold her while we did " harsh " things to her (like putting the ng tube up her nose, or cleaning her chest incision.) It seemed so cruel not to hold her while we were " hurting " her, but we didn't want her associating being held with pain. Also, our physical therapist had us begin a " brushing " routine with . We would brush her arms, legs and back with a surgical brush (not painful!) every three hours while she was awake. This was sort of to overstimulate her system to put it into a sensory overload type situation - it sounds strange, but it worked GREAT for ! (And other CHARGEr's too!) Good luck and give it time. We have DEFINATELY been there! Amy - wife to Mom to (2 1/2) and (18 mos) CHaRgE Atlanta, GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 , This too, shall pass. We couldn't hold Kennedy either until almost 3-4 mos of age, after 2 major surgeries. One day, one of Kennedy's primary nurses {whom I adored}, said to me " , we are going to start holding Kennedy today " . And we did, and we tried it for a few minutes at time, gradually increasing everyday. She hated it, cried like the dickens, the whole bit, but bit by bit she got over it. In a big way. Now, she's 16 months old, about 22 lbs and wants it all the time, squirming and all. Don't give up , he'll get better with this. Just try, even if it seems mean when he's really crying, even for a few mins at first. It will feel so wonderful when he wants to be held again, it'll have been worth the struggle to get him to like it again! Good luck MOM!!! Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >> -- > > I sure wish I could carry around like this. Ever since his surgery he does not like to be held. I think it >hurt him at first to be held. He is getting better at tolerating it ( not for very long!) but if he starts crying we >just have to lay him down, wrap him up and leave him alone!! Before his surgery I had to carry him all day long and he >would cry if I laid him down. I bought one of those slings and just carried him around for the first six weeks. I >really miss those days. It is hard when your baby does not want to be held and cuddled. I sure love the times when he >does tolerate it. Does anybody have any suggestions to help me with this one? > > >mom to (4 mo) CHarGE and (2 yrs) > > > >------------------------------------------------------------------------ >Having difficulty getting " in synch " with list members? >http://www.onelist.com >Try ONElist's Shared Calendar to organize events, meetings and more! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Jodie wrote: She learned to roll from her stomach to back fast because she didn't want to be on her stomach!!! too-pain is a pretty rough incentive She is 21 mos. now and sleeps on her tummy with her little butt up in the air. too-or on his side (he has a Mic-Key button)-could be more " incentive " . Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Cutch88@... wrote: > > > She is 21 mos. now and sleeps on her tummy with her little butt up in the > air. > > This is exactly how my son sleeps! Debbie Matasker mom to 2 w/CHARGE, 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Thank you for the responses. This has given me hope and some great ideas! I called his doctor to order an OT to come out. He does have another one through early intervention but she didn't seem to know too much about SI. I learn so much from you guys that sometimes I feel like I'm teaching his therapists!! I have been massaging him for a few days now and I think it is making a difference. Yesturday I was able to hold him for a while. He really likes to have his legs massaged and smiles when I do it. I asked his deaf-blind consultant about it and she suggested that I snuggle with him while he is laying down and then slowly start to pick him up more. Josh will have open heart surgery in a little while so sounds like I should put him on his tummy as much as I can now!! When he is on his tummy he doesn't really even try to hold up his head but he will do it on the therapy ball. Thanks again!! mom to (4mo,) CHarGE and (2 years) Cutch88@... wrote: > From: Cutch88@... > > , > > You wrote last week how Josh does not like to be held. Madison did not like > to be held either, but it was because she was sore from her heart surgery. > After the soreness wore off she got better and loved to be held. Then, she > had to have open heart surgery, this was extremely painful for her too. It > wasn't until she was over a year old until she would tolerate being on her > stomach!! She learned to roll from her stomach to back fast because she > didn't want to be on her stomach!!! > > She is 21 mos. now and sleeps on her tummy with her little butt up in the > air. maybe Josh just needs some time. > > Jodie > mom to Madison -CHaRgE > Ankeny, IA > > ------------------------------------------------------------------------ > How has ONElist changed your life? > http://www.onelist.com > Share your story with us at http://www.onelist.com > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
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