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3496Re: [Myotubular_Myopathy] regan was 4 yesterday

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  • Scott & Betsy Grant
    Oct 3, 2006
      thank-you, Wendy, for the birthday wishes for Kyle and for the tips on eating, they are very helpful!

      On 10/2/06, Wendy <wendyhughes@...> wrote:

      Hi Betsy


      This is such wonderful news that Kyle is now 10!  Tell him BIG congratulations and we really hope you all enjoyed a fantastic celebration!  My son Zak reached 10 last January and I can't tell you what a momentus occasion it was. 


      Regarding eating, I have some things we were recommended to do with Zak that you can try with Kyle, maybe to help improve his chewing and swallowing.   Drinking through a straw is a safe option and controls flow/swallowing much better.  Colder liquids have higher velocity. 


      Another idea is to get Kyle to close his mouth and lips for 3 seconds, regularly – maybe when he is doing something routinely, like turning the page of a book.   This helps strengthen these muscles (as more efficient to close the lips to swallow) and also helps with dribble control.  Also, another exercise to get Kyle to close his lips is  to get him to:

      Swallow and say "Boo, boo, boo"; then swallow and say "par, par, par", then swallow (and don't laugh) and say "pee ,pee,pee" then swallow and say "bow, bow, bow"…  


      I noticed that Zak tends to rest his chin on his hand to help himself chew especially when tired (but make sure its on the bone rather than behind the chin).  This is quite a neat idea I think – one Zak devised himself!  If Kyle does chew – then get him to chew on one side of his mouth only – and then try the other side next time – less tiring and less likely to choke.   Never mix textures – eg breakfast cereals – as even people without feeding issue s are at risk of choking with these.  Zak always prefers "soft" foods: pastas with sauces; rice with sauces; mashed vegetables and now he is able to manage more solid foods but still cannot "bite" hard or chewy foods (apples/meats/bread rolls/crusts).   Discourage Kyle to fiddle with his lips or face, as this actually stimulates the salivary glands – which can cause them to choke when eating or dribble when not!  We still cut up meats to tiny, tiny pieces, although I know older kids with MTM actually prefer to eat meats as they are able to swallow them better!   You could always make a train (or similar if you think Kyle's too old for this) with pictures or names of all the new foods that Kyle tries on the back of carriages – we did this for Zak albeit when he was 6 but it ended up going all around the room and Zak loved to see what new foods he could try!  

      Good luck and if you need any further "safe eating" tips I have some information I can email.

      Take care and best wishes to you all.

      Wendy (UK )


      -----Original Message-----
      From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com ] On Behalf Of Scott & Betsy Grant
      Sent: 02 October 2006 20:34
      To: Myotubular_Myopathy@yahoogroups.com

      Subject: Re: [Myotubular_Myopathy] regan was 4 yesterday


      Happy birthday to Regan! Yesterday was my son Kyle's 10th birthday also!

      He has had a feeding tube since birth, and he can take in liquids at his own pace without choking, but anything with texture is a real challenge. He loves to try to taste different foods, (his favorite is pizza) just by touching his tongue on it. His teeth do not meet together for grinding. Does anyone have any advice on helping him advance, and any orthodontic advice/experience? I was told by his OT that the next texture for him to try is pudding, (he drinks thin liquids!)




      On 10/2/06, rachel_wrigley < rachel_wrigley@...> wrote:

      just thought id let you all know it was regans birthday yesterday he
      was 4 he didnt understand it was birthday he just thought he was
      getting presnts for being good (bless him) we had a little party for
      him just family came it was a good day tierd us all out marconi will
      be 2 soon time files there both doing well marconi had another
      videoflopsy a couple of weeks ago and showed hes still asperating but
      not as bad as last time we can now give him feeds we just have to
      thicken them up regan and marconi are having there flu jabs soon
      before the winter sets in and all the colds and flus start we keeping
      our fingers crossed for this winter we just hope its a better one then
      last year regans starting to have choking eposiesed its getting to
      nearly every meal time and sometimes when he has dink regan too has to
      have a video flopsy but apart from that there all doing good
      hope everyones well take care
      rachel ,moz and boys


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