Mother's Day 2012

 

Mother's Day this year was very special as I got to spend it with my lovely Mum and my beautiful daughter. My Mum has not been in the best health recently so my brother and I conspired to take her on a lovely day out, to show her how much we love her and give her a reason to smile. We chose the Churnet Valley Railway in Staffordshire and had a wonderful time. 

Slightly east of Stoke-on-Trent, the Churnet Valley Railway is a restored heritage line running steam and diesel passenger trains through 10 miles of the beautiful Staffordshire countryside. The three stations along the line have all been restored or rebuilt to their original early-century beauty, even the advertising signs around the place are from the 1930's and 40's. It really is a great experience.

Showing her baby the sights

I had been a little worried about how well Bee would enjoy it, the trains can be quite loud and I worried that she would be bored sitting for the journey. I underestimated my girl though, she loved it! She was fascinated by the passing scenery and enjoyed walking up and down the carriages, despite the swaying movement! 

Having a look around with Grandma & Uncle Chris

 We were able to get on and off freely at any of the three stops and have a wander about, visit the cafe or even walk back along the canal that roughly follows the line.

 

 After a yummy bread & butter pudding stop at the cafe we had a mooch about the station and a visit to the souvenir shop. Bee was very taken with her Thomas the Tank Engine flag and train colouring book! We had lots of fun waving the flag just like the train guard. She also mastered 'hoo hoo' for choo choo, thrilled :)

As the day wore on we rode the train some more and stopped along the line in a lovely pub for a warm drink and a rest. It was a typical country pub with dogs welcome and a roaring fire, even some chickens roaming around outside! Bee wasn't very impressed with the chickens, she's afraid of all animals but enjoyed doing some colouring in her new train colouring book.

As the day wore on we all began to get hungry and the trains were coming to and end. We loaded up the car and hit the road, deciding to eat at a carvery in Stoke-on-Trent on the way home. It went down extremely well and Bee very much enjoyed her small tastes of veg, potatoes, gravy and cranberry sauce.

My Mother's Day was everything I wanted it to be, with some of the most important people in my life. I had a wonderful time and would definitely recommend a trip to the Churnet Valley Railway!

Bee's Dictionary Updated

**NEW**

Train                                Choo choo

Mr Tumble                        Be-bul

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

Knee                               Knee

Nappy                             Da-pee

Shoes                             Sues

Boots                              Booo

Gate                               Diit 

Bethany                          Bee

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de

Grandma                          Gam-ma / Gram

Great-Grandma                  Noo noo
Great-Grandad                  ChGee ChGee
Clare                                Ka

Gem                                ChGem


Makaton Signs
Yes
No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble
**NEW** Nursery

Aaaand I'm Back...

I've been a little lax with my blogging since December. It's always such a busy month and we've had lots going on since then so it sadly had to take a backseat. But I'm back with a vengeance and intend to keep it updated as often as possible. Much has changed since I last blogged yet in some ways things stay exactly the same. Maybe that's an indicator of having a special needs child.

 

 Our biggest change is Bee is that walking confidently without the aid of her walker. She's still a little wobbly sometimes and especially clumsy when she's tired but in the main she walks everywhere now. I can't tell you how thrilled we were. More than thrilled. Even now, months later, I watch her toddling round the living room or down the aisle at the supermarket and marvel at how far she's come. Bee revels in her new freedom and it's created some challenges for us in how to deal with a very strong-willed toddler who wants to go left when you need to go right. We've invested in a LittleLife Daysack (the bumblebee design of course!) and I highly recommend them. Even if it did take Bee some time to realise that the handle is for us to hold, not her!

We've always considered ourselves very lucky when it comes to Bee's behaviour and thanked our lucky stars when the 'terrible twos' never materialised. She's always in a good mood and very rarely cries, unless there's a good reason. She says 'please' and 'thank you', most of the time without needing to be prompted and is generally charming and sweet with everyone. Or so we thought. We've recently seemed to hit the terrible threes. On top of this Bee has learnt how to be devious, highlighted in a recent trip to my Grandparents. We change her nappy on the bed there and she also likes to bounce on it when supervised. Whilst sitting in the living room chatting and drinking cups of tea Bee came over to me and asked:

"Mama ba" (mama bed)

"No Bethany, we can bounce on the bed when the drinks are finished"

And with that she toddles off so I rejoin the conversation. Minutes later I felt a small hand on my knee and looked down to see Bee, with a nappy in her hand and patting her bum. "Mama ba". You devious little minx! But clever at the same time, very clever!

So now we're having to become requainted with our toddler. Her likes and dislikes have changed, she's tolerant of and aversive to things she wasn't before. It's been a challenge as through all this her speech delay is still causing us some communication problems. She gets very frustrated when she can't express to us what she means or wants.

Something that hasn't changed a great deal is Bee's compulsion habits. We still have to close doors behind us, sit in the same seats in the living room, read the same book over and over again...the list goes on. Sometimes it can be difficult finding the line between accomodating her obsessions and not reinforcing them. It's hard to know where one ends and the other begins, especially when we know it's something she can't help.

Health-wise Bee has been doing very well, with just the one nasty bug over Christmas which landed us in the emergency GP's on Boxing Day. She seems to be much stronger these days, although with a constantly snotty nose (thanks nursery!)

Talking of nursery: Bee loves it. She is now asking to go every day using the Makaton sign for 'nursery'. We're really happy about it as she struggled to settle at first and would scream and cling. Her confidence has soared since starting there and we're really hopeful that Bee will be able to attend mainstream school.

Overall our girl is coming on really well, exceeding everything we were told to expect for her. The fact that we're even able to think about mainstream school is testament to what a clever, strong, beautiful daughter we have. Love you Bethany May xx

And So....

....tomorrow 'Operation Potty' begins

New Words

Gate (as in baby) = diit

Bethany = Bee

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.

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!

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/

Japanese Kabuki Site - http://www003.upp.so-net.ne.jp/kabuki_j/

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.

Makaton Monday

Partay!

Three has come around so quickly, it almost hit us by surprise. Practically overnight our baby girl has turned into a bright, happy, cheeky, demanding, crafty and tantrum-throwing toddler. Her understanding, speech and mobility is improving all the time and we're confident that it won't be much longer before she's catching her peers.

 
We wanted to spend Bee's birthday doing something she would love, which meant soft play, soft play and more soft play! We chose a sensory play centre about 40 minutes away from us. The pictures on the website looked really good and (as we wanted to take advantage of the last of this summer's sunshine) we planned a picnic in a nearby park for afterwards. So with my mum, brother in tow we set out to meet Clare & Isla.

Photo courtesy of http://www.dfosterphotography.com/index.html

Unfortunately the soft play we'd chosen wasn't as good as the website suggested and it was a long way to go for something that we could have done on our doorstep but our girls had a great time anyway. 

Photo courtesy of http://www.flickr.com/photos/gimbulate

 After an exhausting play session (for the adults!) and a slight detour (thanks sat nav!) we went for dinner at a local park. Thankfully the sun was shining and we found a nice shady place under a tree and by a lake. We munched on sandwiches, crisps, cakes and chocolate.... with some token apple slices and grapes thrown in.

Photo courtesy of http://www.dfosterphotography.com/index.html

 

 

 


 
Each year we have promised ourselves that the next birthday Bee will be able to have some of her own birthday cake. And this year we were finally able to keep that promise! On her third birthday Bee had her first slice of birthday cake!

And it went down very well!

Especially the icing! I think my girl has a sweet tooth!

Isla was also very impressed with her slice of cake and even had a good go at helping Bee with hers. Then they both had a go at each other's soggy leftovers. Lovely!

 

 We finished the afternoon with a walk through the park, Bee on her walker and Isla with Bee's new baby pram. Both girls are doing so well with their mobility. At one stage I could never have imagined walking through a park with my girl walking next to me.

To see her now, so independent and confident, makes me marvel at her strength of character. She inspires me every single day.