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Post by vickia on Jul 5, 2007 13:36:29 GMT
Hiya all. Don't seem to have a day without apps recently!!! Anyway, thought I'd update you all and also see if anyone can share their experiences with the following:
Hearing app: Well, Thomas still isn't hearing below 60 decibels and is now finally being reffered to an ENT specialist. Its likely he will need grommits at some stage but I have no idea when! I've been told that it might be a long while cos his ears are so small. lol
Video Flouroscopy: This was done last week and has showed conclusively that Thomas is aspirating (breathing in) his drinks. As he's not coughing straight away this is a big problem. At the minute Thomas is having drinks and milk thickened by 'Thick and Easy' to rectify the problem and will be reassessed in around a year! This is really scary for me at the minute cos I'd hate Thomas not to be able to have a proper drink for the rest of his life! Has anyone else been though this?
Physio app: Well, finally some good news! The physio has assessed Thomas and thinks that he definately won't need Piedro (sp?) boots. Yey! He's not standing properly yet but she wants to give him another 2 months to see if he will do it by himself before getting him a standing frame. Finally some progress! lol
Thomas is STILL not eating proper solid foods - only baby slop! Can anyone give me any ideas what I can do cos I'm now at my whits end! If its not been thru a sieve then Thomas won't eat it!!! HELP.......
Sorry, just read that back and its a bit long and rambling......lol
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Post by Rilith on Jul 5, 2007 14:19:00 GMT
Awwwww Bless him. I know how you feel with appointments hun. I have got them coming out of my ears, if not for Holly they are for my middle one Stevie, if its not for them its for me with MW's and scans and gawd only knows what. Feeding... All I can suggest is you gradually thicken the slop more and more. So its almost like a really thick paste that he has to chew kind of. Its all about learning to move the food around before reflexively swallowing. It worked for us and now Holly is on proper food. Sandwiches and lumps of potato rather than mash
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Post by dugarry on Jul 5, 2007 15:58:13 GMT
We've also just had a month or so with nothing but appointments, mostly the 1 year follow ups but then others like her eyes and ears etc.. and we have her pre-op assessment next friday for her operation to correct her squints and rebuild her tear ducts, so fingers crossed she shakes off her cold to be able to have this op, we desperately want her to have this done and so does her Consultant.
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Post by claireyd22 on Jul 5, 2007 16:17:33 GMT
Hi, yeah its been a busy time appointment wise for us lately too. I can relate to the hearing tests as George wasn't hearing below 70 at his tests before he got referred. Then they did the sleep test and got up to 45-50, now he's having hearing aids in a couple of weeks. Did you get a booklet a couple of months ago from the DSA about deafness, it was very good and expained everything. Regarding the food problem you have with Thomas, George used to be a bit like that too. I started to give him finger food - think it was toast soldiers first - he didn't actually swallow any of it to start with just sucked it and spat it out, but it got him used to lumps. Then I gave him skips, they're really good as they melt quite quick. biscotti (baby ones) are good aswell. He's quite good with his dinners now, he will tolerate small lumps. Not good with bread, just stores it in the roof of his mouth then chokes. Has Thomas had a little bit of white chocolate buttons yet? Grated cheese is good too, a bit at a time. Hope this helps. Good luck with the drink situation too, not heard of that before x
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Post by max on Jul 5, 2007 17:54:09 GMT
Yeah I was going to suggest finger foods - if he likes to put things in his own mouth? Caleb loves to feed himself, mainly tomatoes!! (v healthy so I'm all for encouraging that!)
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Post by sarahncharlimai on Jul 5, 2007 18:43:41 GMT
sounds like you have been very busy, its been quite for us lately! I agree about the finger foods charli seems to do very well with very well cooked carrot sticks, our speech therapists suggested to us a while back to use toast and move it about her mouth whilst holding on to it sounds she gets the feeling of it to encourage chewing if that makes sense! some of the children i work with use thick and easy with their drinks but the children i work with have complex health needs. Great news about the physio, we have been referred for them for charli but they dont think that she will need them as she stands really well but because of the long waiting list they would rather put her name down just in case. x
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Post by Tace on Jul 5, 2007 19:32:17 GMT
Leo is the same Sarah he has no problems but we are in the list as its 19 months at the mo!! You do sound really busy, we've not had an appointment for weeks, it feels wierd!! We were offered a standing frame for Leo when he was at that stage too, the OT brought one to try, Leo HATED it, he couldn't move his legs and he just struggled to get out of it, so we never had one, and to be honest didn't feel he needed one. No food advice I'm afrais as both mine were good with food (wish that were still true lol!) but sounds like everyone else has given you some great tips.
T x
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Post by vickia on Jul 7, 2007 8:58:29 GMT
Thanks everyone. Funnily enought Thomas can manage biscuits and chocolate buttons with no problems! lol. His nursery told me yesterday that he had managed to eat their food that had been blended but was still lumpy!!! Couldn't beliee it! He ate a full dish of cowboy pie apparently! At home last night he managed to eat some fruit puree that had little lumps of apple in it too. He got half way thru it before realising there were lumps. Once he knew about them he did spit them out but I just kept putting them back in until he ate them - he didn't even gag once! I'm hoping we've turned a corner now........
Just while i'm here.....we're going to menorca in a few weeks and we're gonna need to take his Thick & Easy on the plane with us. Does anyone know how the airport will react to a tin of white powder in my hand luggage! ha ha. Seriously tho, can I take this with me? Thomas needs it for every drink and I don't want to risk putting it in my suitcase in case it goes missing or explodes all over our clothes! Any ideas anyone?
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Post by lisajg on Jul 7, 2007 10:35:32 GMT
You sound like you've had your hands full, can relate to lots of what you're saying. Airlines must be used to people taking baby milk powder but maybe give them a call just to put your mind at rest, I'm guessing they'll say put it in your hand luggage and they'll check your bag before they get on the plane. With the hearing, it's pretty common for children with ds to have glue ear, sometimes having a dairy free diet can help reduce it for some of our kiddies. With the video fluoroscopy, Harrison had one of them when he was about Thomas' age and it showed similar things, sometimes Harry was aspirating so it was causing chest infections. Does Thomas get alot of chest infections? It's all related to their muscle tone, so as Thomas gets older and stronger then that will improve for him (Harrison is miles better than he used to be with it). With the eating, again similar experiences with Harry, his speech therapist also specialises in feeding so helped me alot with this. Some of the finger foods you can try are pombear crisps, wotsits, quavers (not very healthy I know but they melt in the mouth so they don't choke and get used to different textures). Boudoir biscuits are good too (they're the old trifle sponges), meringues, ice-cream wafers (these all may sound a bit odd but they're easy for them to digest). It can be a slow process but he'll get there, he certainly looks like a healthy little chap so I wouldn't worry
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Post by pinkshell1110 on Jul 7, 2007 15:36:23 GMT
hi there vickia, we had to take charlie's baby milk with us to florida and we left it in the suitcase no one at either customs mentioned it and florida's customs were very strict even down to removing shoes,chewing gum ,baby socks and shoes and removing the babies from their pushchairs! i dont think you will have a problem but one thing to be careful of is your luggage weight allowance ,the milk and nappies really bump the weight up and i am presuming that thomas will not have an allowance as jasmin didn't .anyway have a great holiday and bring back lots of piccies.xxxxxxxxx
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