[tri-med] Re: Just Have To Share Alex is eating apples!!!

----- Original Message ----- 
From: "Penny Victor"
>>#2 because of his grinding teeth not
> sticking out very far...

Holly, I never thought I would see the day either. But it gives me hope, 
maybe some day he will also do the corn on the cob thing?? (first he has to 
learn to like corn I suppose :-)))

Penny, Alex has the same problem. And even though his molars are only just 
through the gum line he still manages to chew quite well with them. Its 
going to make braces interesting though......

As for the squirrel bit - Alex still does that, sort of. And for Alex its 
still a dysphagic/dyspraxic thing. Because Alex eats on his own now I don't 
really have the control to make him clear his mouth between bites/spoonfuls. 
Meals are constantly interspersed with "finish whats in your mouth first" 
and Alex totally ignoring me. So he usually chews a bite, swallows half, 
then adds more to chew, swallows half again. He still needs that mouth full 
to be able to chew and form a bolus - his tongue doesn't do it efficiently 
and his mouth just cant register whats in there.

In theory it should make for an unsafe swallow - but his swallow studies say 
that it is, and he has never aspirated and doesn't get asthma soooooooo I 
guess I just have to live with it, and for the therapist in me thats hard 
(and of course he has to live with me telling him to swallow before adding 
more :-)))))

How long since Devon has had a swallow study Penny??

With Alex it reminds you of the "gluttony" eaters you see in movies, only he 
doesn't eat that fast. Mealtimes are still long in this house. Its one 
reason why I have all but given up eating in the dining room - its boring 
for me!!!! I have finished and am still sitting there waiting for Alex to 
finish an hour later. Conversation is usually limited because hes not eating 
if he's talking.

I realised after I sent that post that some of the newer members might not 
realise that its a big thing for Alex to be able to bite an apple like that, 
not just because of the dysphagia, dyspraxia and low tone, but because he 
was born actually missing muscles in his face and around his mouth 
especially. Thats why its rare to see Alex smile in a photo - hes very self 
conscious of it. When he smiles consciously its a severe Sylvester Stallone 
type smile. Its actually something that seems to be quite common in a number 
of mosaic 18's, especially those with some form of hemi-hypertrophy and 
makes me wonder if the muscles are not missing bilaterally for some of the 
"fulls"??

Unconsciously, the wide grin type smile is fine - it only effects the teeth 
showing smile.

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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