Thursday 27 October 2011

Aspiration Difficulties

Back in June I blogged about our experience at Bee's repeat video fluroscopy (http://bit.ly/sh76iW) and the results we were given by the speech therapist: we could start with puree consistency and thicker, but no liquids. Bee still aspirates liquids.

So we stuck to it. Kind of.

Bee still will not tolerate puree. She won't let me feed it to her and won't feed herself with it. So instead of starting with that we moved straight on to what the SLT calls 'bite-and-dissolve' food: sponge cakes/fingers, Wotsits, wafers etc. That went much better than the puree so we moved on to food that's easy to swallow like biscuits, crisps, bread, potato, pastry, crumpets etc.

So far it's going very well. Bee loves to eat and will try all kinds of flavours, we've found very little she doesn't like. For a child who's never really eaten she's surprisingly unfussy.

We've hit a little snag with her technique though. Bee can bite down on food with a straight up and down motion (although she prefers not to and will tear off small pieces to put in her mouth) but she hasn't developed the 'round and round' jaw motion involved with chewing food. She never eats anything that could be called a substantial amount, usually a biscuit's worth or a 1/4 of a sandwich, which is probably down to two reasons: we don't think she really understands the idea that the food is sustenance, more sees it as a type of toy or thing to play with and she's never hungry. As she's tube-fed regularly (every 3 hours) I don't think Bee understands the feeling of hunger, or that food can alleviate it. But we can't stop tube-feeding her as that's where she gets her nourishment and daily intake of goodness. So how do we solve the problem? Bee seems to be stuck in a limbo of wanting to eat but not moving any further forward with her technique and understanding of food.

Our problem is complicated by the fact that Bee understands that other people drink and she doesn't. She is constantly asking 'mama ah', which in Bee-speak means drink. It's the sound we taught her to make to pretend she was enjoying her cuppa during 'tea parties'. The guilt eats away at me and I'm dying to let her have something to drink, though I know that her enthusiasm doesn't change her body's inability to deal with liquid.

Monday 24 October 2011

Bee's Dictionary Updated

Bee has a handful of new words, our favourite being 'knee'. She likes to come over, point at your lap and say "mama knee". Who can resist!?
Our word total is now up to 38, a massive achievement! 
*NEW*
Knee                                Knee
Nappy                              Da-pee
Shoes                              Sues
Boots                               Booo


Word                                Sounds Like
Yes                                  Yeah
No                                    Naow
Ta                                    Gaa
Thank you                         Guy-or / Guy-oo
Car                                  Bum bum
Ball                                  A-bawl
Monkey                             Ooo ooo
All gone                            Uh gnnn
Baby                                Ba ba / Baby
Hello                                Hey-yo / Hiya
Bye bye                           A-bye / Be bye
Dog                                 Uff uff
Food                                Num nums
More                                Moh
Bubbles                            Bu-bull
Door                                Dior
Up                                   Up
Keys                                Daa
Bag                                 Ba
Play-Doh                          Bawl
Bed                                 Ba
Chair                               Ka
Book                               Booo
Outside                           A-hide
Boat                               Ba
Me                                 Me
Pram                              Bam


People                             Sounds Like
Mummy                            Mama
Daddy                              Da-de / de-de
Grandma                          Gam-ma / Gram
Great-Grandma                  Noo noo
Great-Grandad                  Dee Dee
Clare                               A-Ka
Gem                                Dem


Makaton Signs
Yes

No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble 

Who've also had another wonderful language development: Bee has gone from saying 'baba' to 'baby'! We're so thrilled with that as it's a real progression for her. Well done Bee!

Sunday 23 October 2011

International Kabuki Syndrome Awareness Day

Today is International Kabuki Syndrome Awareness Day, please help us spread the word.You can use this image on your Facebook/blog page or share the link to our UK resource, Kabuki Stars:
http://www.kabuki-syndrome.co.uk/

Alternatively please have a look at our friends around the world:
 
Supporting Aussie Kids with Kabuki Syndrome (SAKKS) - http://www.sakks.org/
Kabuki Syndrome Network (Canada) - http://kabukisyndrome.com/
Association Syndrome Kabuki (France) - http://asso.orpha.net/ASK/cgi-bin/
Kabuki Synrome Network (The Netherlands) - http://www.kabukisyndroom.nl/


A special 'HAPPY KABUKI DAY' to all the special KS families out there, I hope have a special time with your loved ones.