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Post by michellebean on Feb 1, 2008 0:21:27 GMT
When i can expect my 5 month old ds daughter to start reaching out to touch things? She has not shown any signs of it yet and suffers lack of muscle tone on top half of her body (shoulders and neck). She has a very good grip with her hands and strong back and legs. If you put her on her belly she sky dives and has just started to lift her head. Also she has an ASD in her heart and is being mostly tube fed by us. Can anyone tell me when babies with nasal gastric tubes start weaning? Thanks Michelle
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Post by pinkshell1110 on Feb 1, 2008 0:34:15 GMT
hi michelle charlie was tube fed as well i didn't start weaning him till he was about a year just because he was so poorly with his heart and would'nt take anything by mouth, i think they give a guideline of 26 weeks for kids who dont have DS, i think you will know when sh'e ready cos her tube feeds will not satisfy her , but i dont think there's any harm trying to see if she will take anything off a spoon, something really runny like baby rice,. As for the reaching out i cant help really i cant remember how old charlie was, but all kids with or without DS develop at different stages ,but if you have the DS insert for your red book it may give you an idea of the age she could start It's great that she's lifting her head showing she has good muscle tone dont worry hun she will get there lots of love shell,charlie and jasmin xxxxxxxx
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Post by Rilith on Feb 1, 2008 18:45:38 GMT
Hiya Hunni Holly was NG fed from about 12 weeks onwards and she has heart problems too. I started to wean the same time as I did with my other children and that was around the 12 to 16 week mark. Not that she needed the food, but more of the practice of it really. I think Holly was at 17 weeks before we tried on a regular basis. We stuck with baby rice for ages with her cus it was the only thing she could really tolerate (foold allergies) Babies with Downs have low muscle tone in their mouths too and chewing food is a good way to work those muscles, they use the same muscles for talking too so it only seemed right to me to start for all of the reasons. As for reaching and grabbing, It will come Hunni. It can sometimes take a little bit longer for them to get there. Holly did nothing until she was about 9 months old, then all of a sudden she was sitting, laughing, grabbing and chewing on stuff... LOL Patience is a virtue as they say and trust me, the one thing I have learned in having Holly is patience
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Post by michelle1987 on Feb 1, 2008 22:47:15 GMT
hi. my kimmy is 6 months and she was really floppy around arms and head although her legs wer strong and she had a good grip, she rolled twice when was 3/4 weeks although she has not done it since her coordination isnt good meaning that she isnt yet ableto reach for things properly although she is trying she was tube fed for a few days when born and them onto bottle, i had to wean het at 13 weeks as she was having an 80z bottle and after wanted what we were eating lol i started on baby rice and then fruit and veg she is now on dinners and i make it all including juice she loves her food ive been lucky as the hole in her heart closed by itself and she does not have any allergies. she is now trying to sit but this is only a few seconds she isnt rolling or pushing herself up properly
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Post by michellebean on Feb 10, 2008 1:12:54 GMT
Hi Thanks for all the replies. I have just been told by the cardiologist that they want to operate on Rosie's heart in the next 6 weeks! She has a patent ductus arteriosus and and atrial septal defect. They want to operate on the first one, hopefully by key hole surgery if the can. I am scared stiff and not thinking about her reaching out to grab things or not now! Any advise or experience would be very much appreciated. Sorry i don't get on here much but i will get back as soon as i am able. Michelle
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Post by pinkshell1110 on Feb 10, 2008 2:08:31 GMT
hi there michelle, charlie also had a PDA and ASD, the PDA was repaired when he was 8 weeks old and he weighed under 2lb, ,i was petrified but they said they dont go into the heart it's just outside so it is not heart surgery, that was how i got through it just thinking it wasn't heart surgery. The ASD was done at 9 months with the VSD that was open heart surgery but these are the most common heart surgeries and they have a very high success rate i was told 95%, although they both sound scary, these ops are so routine to the surgeons, even on the tiniest of babies. I f you want any info dont hesitate to pm me,it is bound to be a very worrying time, any type of surgery is on your little babes, but don't suffer on your own hun take care babe dont forget we are all here for you love shell,charlie and jasmin xxxxxxxxxxxx
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Post by pinkshell1110 on Feb 10, 2008 2:08:58 GMT
oops by the way rosie is gorgeous xxxxxxxxx
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Post by debs4 on Feb 10, 2008 14:24:46 GMT
Gemma had open heart surgery at 3 months old, and she is so much better and healthier now. I too was petrified and its a tough time when they are in hospital, but these little children are tough cookies and I am sure she will be fine xx
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Post by claireyd22 on Feb 10, 2008 20:31:17 GMT
Hi Michelle. George had open heart surgery at 6 months old for his AVSD. We were amazed how quickly he bounced back and he was even smiling by about day 5! Our little babies are so much braver than we are. As the others have said before we are all here for you. Take care xx
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Post by odiness on Feb 10, 2008 23:17:35 GMT
Hi Michelle
I can't offer much advice really because Jasmine only has a minor hole in the heart which will hopefully heal itself and her muscle tone is pretty good so she is lifting herself up, rolling etc. Just as everyone said that not just DS babies but all babies develop at different stages, there will be other things that Rosie (who is gorgeous by the way) will be doing before others at the same age. I just hope everything goes well with the heart op and would recommend that you push for whatever help you can get from the professionals. If she doesn't already get it, speak to her pead about physio therapy and maybe portage if it's available in your area, Ocupational Health may also be able to give you some guidance around things that will encourage Rosie's development. I found that nothing works better than a little encouragement though so persevere with putting her on her front and pulling her up by her arms into sitting position, also you can make rolling over into a game. As for weaning, I started Jasmine at 16 weeks but as Rilith said just with baby rice and more to get her used to it. Jasmine is now having solids twice a day but only small amounts and very smooth stuff. Take care, Lucy x
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Post by karenh on Feb 11, 2008 21:41:40 GMT
Hi michelle im afraid i haven't got any advice to give but wanted to say hi and your little girl is gorgeous x
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Post by michellebean on Feb 11, 2008 22:44:04 GMT
Thanks to all who sent messages. Its really reassuring to know i am not alone! Rosanna is on the waiting list for portage and physio. Also speech and language therapy will be seeing her. I will be getting some support from a charity called 'Crossroads' who will send the same person to me once a week for 3 hours so i can do some jobs or take a nap . Rosanna is currently being reviewed for DLA as she is on the lowest rate at the moment but that was given before all the heart problems were discovered and the tube feeding. Hoping they will put her on the medium or high rate. I will try to get on here more often as its so supportive and helpful. Michelle
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ali
New Member
Posts: 8
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Post by ali on Mar 25, 2008 14:24:26 GMT
hi its mum to dominic fed up been refused dla again and work have told me they are not willing to reduce my hours.wanted part time but they have said no.so in limbo at the moment but dominic is doing great.
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Post by tantalizintina on Mar 25, 2008 15:07:18 GMT
hi michelle... im goin thru exectly the same huni, altho lewis is only 10 weeks... but i know how ur feeling n its scary stuff aint it? all the wonderful moms n dads on this site av assured me everything will get better n eventually we'll enjoy our babies, i dno about u but i cant wait...... x
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Post by michellebean on Apr 6, 2008 17:06:12 GMT
Hi everyone. Just an update on Rosanna. She is doing ok at the moment. Still on oxygen at nights and am still having a battle with feeding. She just does not like eating or drinking! She takes a little of her milk orally but then the rest goes down the n g tube. I am now feeding her 3 times a day with pureed fruit or veg etc and she does not want to take it at all! Feels like i am getting nowhere but i know i have to persist and she will get there eventually. Still waiting for speech and language therapy to see if they can help. She is on the middle rate but i am very nearly finished with the review form to see if they will give her the high rate. Also am in the process of applying for carers allowance as i have now spoken to tax credits and worked out that i will still be a bit better off by claiming carers allowance. Apparently carers allowance is counted as an income so any other benefits you get (except DLA) will be affected. Get in one hand and take from another i suppose. We are off the the Brompton hospital in London tomorrow for another 2 night sleep study (assuming when i call in the morning that they have a bed/cot available for her). They will do one night with oxygen and one night without and see the difference on the read outs etc. Have no real idea what they will do with the results but will have to wait and see i suppose. Rosanna seems well in herself though and generally quite lively with her arms and legs now. Her voice is especially lively and we often cant hear the tv or anything when she is in full shout!!! Bless her. Its so good though. She has rolled over a few times onto her belly and then 'sky dives' cos she cant get back lol. She is also reaching out and touching toys sometimes too which is great progress. Hope all of you and babies/children are well. I am going to have a look round site now as haven't been on in ages. Michelle x
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Post by michellebean on Apr 6, 2008 17:37:07 GMT
why isn't my ticker working?
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Post by odiness on Apr 20, 2008 13:29:55 GMT
Hi Michelle, sounds like the gorgeous Rosanna is coming on fab. She's about the same age as my little monkey. It's strange how they start something and master it all of a sudden. I've been thinking for ages that I wish her hand eye co-ordination would improve as she wasn't grabbing and holding things like some babies do.... now I can't keep my glasses on my face and everything she sees she makes a grab for then proceeds to shake or wave it around and cause as much damage as possible by either hitting herself or the nearest person around the head with said object! lol
Lucy x
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Post by max on Apr 21, 2008 10:27:11 GMT
A little girl at our special needs group (has DS) didn't eat at all for ages and her poor Mum was worried. She is almost 2 now and suddenly about a month ago she started eating - and went to 3 meals a day within a week and also wants to feed herself!!!!!!! Like Lucy said - one minute you are wishing they would do something and the next they have mastered it and it's all going crazy!
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