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Post by sarahncharlimai on Apr 7, 2007 15:13:19 GMT
hi, charli mai is 10 months and nearly two weeks old and she still has no real interest in food, i have been trying to wean her since she was 6 months. breakfast is a defo no no odd days she does ok with dinner and tea but then most days she just spits most of it out, crys when she sees the spoon and rubs it all over her face ( which is quite funny really she looks so sweet ) has any one else had this experience? any advice? i try to relax about her eating but its hard cause i constantly worry about her weight x x
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Post by shirley on Apr 7, 2007 17:09:03 GMT
I have started to introduce Grace to baby rice once a day before her bottle at tea time in anticipation of her reacting the same as charli, it takes 2 to get about 2 little spoons of it in her. My speech therapist recommended starting it early so that by 6 months she is well used to it but I dont think so. Sorry I have no advise for you though
What weight is she ? She looks healthy enough in her picture
Shirley xx
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Post by pinkshell1110 on Apr 7, 2007 21:03:15 GMT
hi we used to have real hang ups about feeding, charlie wasn't weaned til he was 10months, it was such a struggle we used to constantly worry about weight too, eventually we just let him eat what he wanted, when he would eat it, he is now nearly 3 and has only just started to eat normal amounts,his paed said as long as he was putting on some weight he wasn't to worried, he only weighed 1lb 14 ounces at birth and was really poorly, so weight was a huge issue, one tip i was given was to cut down his formula cos it was fillin him up and after a couple of days he started to eat a little more than he was Have you tried finger foods charlie ate them loads better than sloppy food i totally agree with shirley though she looks really healthy in her picture, hope things improve love shell,charlie and jasmin xxxxxx
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Post by sarahncharlimai on Apr 7, 2007 22:16:30 GMT
hi, charli was 5 lb 6.5oz when she was born they said she was a good weight seen as she was born at 37 wks ( nearly 34 but managed to stop it) i breast fed her and after four days needed to use a nipple sheild has she would move her tongue and stop her self from feeding by three wks old she went down to 4 lb so the neonatal team said that i needed to start introducing formula aswell as breast milk after three days she still did not put weight on so they introduced infantrini aswell as breast milk then by 6 wks i ran out of milk i felt so guilty about this but i think it was the stress of it all. so since then she has been on infantrini she has always been a slow feeder and tires easy ( probably due to her heart condition ) i tried baby jars for a while but she had no interest at all so i brought some recipe books and make all my own food up but even still she has no interest she hardly ever crys for milk let alone food! she loves to hold bread or baby biscuits and will take it to her mouth but the minute she gets bits in her mouth she spits it straight out. we recently sore a dietician she suggested cutting down the infantrini and weaning her on to formula so for the last two weeks this is what i have done but im lucky if she has 2oz of this. she is 14 lb 6oz now
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Post by pinkshell1110 on Apr 7, 2007 23:37:25 GMT
oh bless yo you seem to have worked so hard and so has little charli,my charlie was also on infatrini (only been off it 3 months) he also had heart condition which obviously causes them to tire easily, you both must be doing something right she has put weight on,,i used to give charlie an hour to finish his milk what he didn't drink was thrown away in the hope that next feed he would be hungry but it never seemed to work,i think feeding is a big issue for most DS babies with heart conditions, is charli going to have surgery? that did help my charlie after about 6 months,charlie still only weighs 21lb at 3 so little charlimai's weight is still quite good, i got advice from portage,HV ,dietician and speech therapist but none of it worked apart from cuttin back the formula , does she have a sore mouth?, ooh the one thing i did do was change formula's he was on aptamil which seemed to suit to start with, but after his surgery he just wasn't happy so i changed to SMA, which he still has at night and he did settle down after a couple of days, i think it could just be a case of trial and error,charlie always prefers savoury but some may prefer sweet or a combination, Don't worry yourself to much hun i am sure things will imrpove and you sound like you are doing a fantastic job and trying everything iy will get easier hunni, it took us 2.5 years but i am sure you will both get there in the end and dont forget there is always some one here that will try and help you lots of love shell,charlie and jasminxxxxxxx
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Post by sarahncharlimai on Apr 8, 2007 10:22:56 GMT
oh thanks i feel that much better already, its ok these proffesionals saying relax etc, when its not there child, but after hearing how heavy your charlie is i feel that bit better. When i was pregnant and found out charli had ds they did a heart check straight away ( we had amnio) in stoke and birmingham they said she had 4-5 holes in the heart and only one valve thats acting as two, its also leaking slightly, they said she may need surgery straight away, when she was born they checked her heart and found only two holes the same problems with the valve but that they were not as concered as before, so since then she has been having regular checks in birmingham under the care of Dr Dhillion he says that she is in no immediate danger and is hoping to operate between the ages of 3-4 yrs as its a big op and wants to wait until she is stronger he says obviously if things change then it maybe brought foward. We go to birmingham 8th May, so fingers crossed it remains good news, i dread the thoght of her having surgery, i cry when she has injections so how i will cope when she goes through that i dont know. I am giving charli two bottles of aptmil a day but like i said she dont seem to like it, ill give her a few more weeks and may concinder changing it to something else, she does seem to like sausage casserole and yogurt so i have found something she likes at least lol. Your little Charli looks such a little angel in t pic but i bet he keeps you on your toes! lol
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Post by sarahncharlimai on Apr 8, 2007 10:24:34 GMT
forgot to say there does not seem to be anything up with her mouth at all. she does do alot of tongue thrusting which i belive alot of baby's with ds do.
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Post by Rilith on Apr 8, 2007 14:59:57 GMT
I have a whole BUCKET load of hints and tips to get lil feeders going. Holly has heart defects too and was tube fed for a good 12 months (6 months solely tube fed). She was very stubborn when it comes to food. First I would make the food taste very milky and smooth. I cook all Hollys veg in the infatrini milk (adds extra cals aswell as tasting nice and milky... LOL) I would start teeny and just offer a tiny spoon full at each meal time. Once she has gotten used to taste and texture she may start to show a little more interest in food, as she does start to reduce the milk feeds by 50ml and always offer food before the milk. She will get the hang of it. Its taken me until now to get Holly off her tube (Been tube free for a month now) and she has all her calories from what I make for her, I still cook her food in her infatrini milk. (Oh and we are under Birmingham too Our consultant is Dr Wright )
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Post by sarahncharlimai on Apr 8, 2007 18:15:43 GMT
thanks rilith i will try that then i never thought to cook t veg in milk ill give it a go, i do use her milk for breakfast and i do try food before milk but she just crys i only offer her a ice cube amount as i cook all her food and freeze it . Im pleased that holly is doing well of the tube did she have ng tube or a peg? Charli was on ng tube for a wk cause of her feeding and she used to feed so slowly still does but not as slow as before. As holly has a gluten allergy i suppose food can be a issue for you? we have seen dr wright before hes really nice but we mainly see dr dhilion.
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Post by Rilith on Apr 8, 2007 19:38:56 GMT
One of Holly's fave breakfasts was home made rice pudding with a yoghurt mixed in. She couldn't have normal breakfasts and the gluten free stuff was disgusting !!!!...LOL I can post some of the simple recipes I used for Holly if you like. They were really nice acutally... made my mouth water.... LOL She used to have an NG tube, there was talk of her having a peg but thankfully I don't think she'll need it now, she might have to go back on the NG when she has her surgery, but it will only be short term though. Do you feed the milk on demand or do you have set meal times? We have always had the set meal time here, it made it a little easier to know when "Dinner time" was coming and we were able to offer Holly a little food before she got too hungry (not that she ever got hungry.... LOL)
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Post by sarahncharlimai on Apr 8, 2007 20:20:44 GMT
some recipes would be fantastic thanks, i try to keep to set meal times as much as possible i try to stretch her feeds out to to see if that makes a differance, she rarely crys for food or milk though. when do you expect holly to be having surgery and is that for her heart condition?
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Post by pinkshell1110 on Apr 8, 2007 22:46:52 GMT
hi sarah so glad you feel a little better,hope all goes well with your appointment, charlie still never cries or asks for food, whereas my little girl jasmin who is 20 months i constantly asking want choc choc ,want biscuit, need juice lol , sometimes it drives me nuts and now she can open the fridge i can never get her out of the kitchen.oh and yes the little man does keep us on our toes but we wouldn't have it anyother way lots of love shell,charlie nd jasmin xxxxxxxxx
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Post by Rilith on Apr 9, 2007 6:18:46 GMT
Holly is like that Shell... LOL She'll have it if we offer it, but she doesn't cry for food... LOL.
Her surgery should be in the next few months hopefully, and its to repair the AVSD. Scared but want it over with and done IYGWIM.
I'll get some recipes typed up then hunni and get them posted on here
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Post by sarahncharlimai on Apr 9, 2007 20:19:40 GMT
pinkshell: my neice is like that she loves stopping over and helping me look after charli, she is only 5 going on 15 lol she talked from such a early age she always asking 4 something haha but i know what you mean we love them all the same. Charli keeps me on my toes in her own little way but i know ive got alot more to come, thats why ive started aquaareobics to help keep me fit lol.
rilith: yikwym, i feel the same sometimes i want her to have it done sooner rather than later so that its repaired but i know and understand why they want to wait but it dont stop me worrying about it from time to time. About the recipes whenever you get chance hun that would be smashing x x
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Post by vickia on Apr 10, 2007 9:58:06 GMT
I will definately be giving Rilith's recipes a try! Thomas has been weaned since he was 5 months and he does really well - as long as it is a jar of baby food!! Can anyone give me any tips to get Thomas to eat lumps? The only food he will eat comes from those 4 month old baby jars. He also has custard and yoghurt but thats it. Finger food is not going down well and he spits it out. The only finger food he likes (and I suppose its not strictly finger food) is malted milk biscuits. He sucks them until they go really soft and then eats it. Its costing us a fortune in baby food and nothing I make seems to go sloppy enough! I even bought a new blender but Thomas still managed to find lumps and spit them out! lol. Is this a common thing with Downs children? My eldest was fussy with lumps but even he ate them eventually. I'm starting to think that I'll be buying baby food for the rest on my life! aaarggghh!!!!!
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Post by Rilith on Apr 10, 2007 10:35:53 GMT
Holly has only just started to manage lumps in the last few months. Its a matter of making the pureed food just that little bit thicker. What we used to do with the jars was add a spoonful of baby rice to it, it worked like a thickening agent, she had to work that little bit more to move the food around her mouth. From there we progressed onto teeny soft lumps, more often than not she would spit them out, but we just kept on giving them to her.... LOL Its very good exercise for the tongue if you think about it. They have really got to work at finding the lumps and moving them to the front to push them out. So don't get stressed by it, get proud of it
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Post by sarahncharlimai on Apr 10, 2007 10:42:38 GMT
you know ive never thought about it like that but i guess your right, ill remember that when i think charli is ready for lumpy foods x x
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