Bethany's Journey with Kabuki

And So....

2011-12-07T20:26:00.001Z

....tomorrow 'Operation Potty' begins

New Words

2011-11-17T12:14:00.001Z

Gate (as in baby) = diit Bethany = Bee

Aspiration Difficulties

2011-10-27T23:18:00.001+01:00

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

Bee's Dictionary Updated

2011-10-24T15:03:00.000+01:00

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

International Kabuki Syndrome Awareness Day

2011-10-23T09:30:00.000+01:00

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 (

Makaton Monday

2011-10-03T17:45:00.005+01:00

Partay!

2011-09-30T22:52:00.000+01:00

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

Happy Birthday!

2011-09-28T21:25:00.000+01:00

Today is Bee's 3rd birthday. It's such a cliche to say that time flies but it really does. Three years ago today, at 5:12pm, I was being delivered of a tiny bundle that would change our life. Bee had a difficult start: SCBU, feeding problems, breathing problems and even when we got her home she was still in and out of hospital with illness. She missed milestones and we despaired, confused

Playdate

2011-09-27T20:49:00.000+01:00

We got to spend an afternoon with Bee's best friend Isla this weekend.We shared cuddles, giggles and lots of cake! Mmmmmm crisps! My little Bee managed to wheedle her birthday present out of Clare early. Although, if I'm being honest, it was more at the urging of a rather over-excited Clare! And what a wonderful birthday present it was! Bee is in love. Tuesday she

A Walk in the Park

2011-09-26T22:00:00.000+01:00

This weekend Bee and I spent a lovely afternoon on Sankey Valley Canal with my Mum and her dogs. The sun shone down and, despite the dogs, Bee did lots of walking. Her confidence around them is getting better, although she's still very afraid if they come too close and hysterical if they bark. We did lots of walking and helped Bee collect found objects to put in her little In the Night

Nursery

2011-09-26T21:00:00.000+01:00

Well, we've done it! Bethany has survived her first session at nursery. And her second, third and fourth! Equally as impressive: I survived them too! Heading into nursery Her first session was only an hour long and my Mum and I, who I had took along as Foz had to work, were able to stay. Bee was able to play with the nursery assistants while I did a lot of form-filling and boring stuff like

Makaton Monday

2011-09-26T18:25:00.005+01:00

Mmmmmm cake! In two days time it will be Bee's 3rd birthday and we can't wait for her to have her first taste of birthday cake this year!

Makaton Monday

2011-09-19T18:42:00.012+01:00

Bee likes to give her pennies to the person at the till when we go shopping. She doesn't really understand the concept of money and paying for things yet but I think it makes her feel important and involved to take part in the shopping.

Makaton Monday

2011-09-12T17:38:00.004+01:00

Minnie Mouse

2011-09-05T19:36:00.000+01:00

Bee has a new word: Cutest. Thing. Ever.

Makaton Monday

2011-09-05T18:30:00.005+01:00

One Week and Counting...

2011-09-01T21:17:00.000+01:00

Today marks one week until Bee starts nursery. Feeling: apprehensive, nervous, excited... In so many ways next week can't come quick enough but I could wait forever. I've never left Bee with anyone who wasn't close family and so the thought of leaving her in the care of complete strangers is terrifying. Even if it is only for 3 hours twice a week. I know her quirks and foibles, her likes and

Mr Tumble

2011-08-30T23:54:00.001+01:00

My little Bee has a slight (massive) obsession with Something Special on Cbeebies. When I say 'obsession', I really do mean that Mr Tumble occupies her every thought, every hour of the day. I'm sure she dreams about him. When smaller, Mr Tumble would be the only thing that would calm her during her bouts of extreme illness, even now sometimes only Mr Tumble will do. She can't yet say 'Mr Tumble'

Bee's Dictionary Updated

2011-08-30T20:45:00.007+01:00

Bee is gaining new words slowly but surely and we have some new ones to add to the pile... *NEW* Me Me Pram Bam Word Sounds LikeYes YeahNo NaowTa GaaThank you Guy-or /

Makaton Monday

2011-08-29T18:23:00.007+01:00

Marching On

2011-08-24T23:35:00.008+01:00

Yesterday morning we attended Bee's weekly group speech therapy session. As usual she scooted through the door with her walker and didn't look back shouting 'a-bye mama' all the way. I rescued her discarded walker and left her to sit with the books while waiting for the session to start. Every so often she would look up and say "mama? Boooo". Mama, book. Beautiful. As the session started she

Space and Steam!

2011-08-24T23:07:00.000+01:00

Last week we visited The Space Centre with Families United. It's a multi-sensory centre for special needs children and we had a wonderful time! Bee loves soft play anyway but when you throw in some funky lights, bubble tubes, sensory wall and a great big slide, she was in playtime heaven! The moment she got a peep through the door the the centre beyond she wanted to be away. She wriggled so much

Makaton Monday

2011-08-22T18:11:00.004+01:00

Golden Oldies

2011-08-18T20:37:00.005+01:00

I've just found a an old phone of mine with a wealth of baby Bee pictures on it! I just had to share! Pre-tube Having her ECG

Baking!

2011-08-17T23:50:00.000+01:00

Today we did something that I've been dying to do since Bee's FunPod arrived: we baked cakes! As it was our first time we started with a cake mix, I thought it would be easier than managing different ingredients and a grabby, inquisitive toddler! After browsing the baking aisle in Tesco I decided on the Milkybar mix as Bee loves white chocolate so I knew I'd be on a winner. The bit Bee enjoyed

Makaton Monday

2011-08-15T18:09:00.002+01:00

One of Bee's favourites!

Sensory Success!

2011-08-14T22:23:00.000+01:00

Last Saturday Bee and I spent a lovely afternoon at a local garden centre with my Mum and Ken. Bee had been a bit off-colour for a couple of days and was quiet and a little clingy. We took her walker as my little miss is very keen on her independence these days and I wanted to give her the opportunity to try new places and new surfaces to walk on. Bee was not keen at first. She wouldn't walk,

UK Riots

2011-08-10T00:06:00.000+01:00

Tonight I just want to send my best wishes to all my friends around the UK. Stay safe, remember to check on elderly or disabled neighbours and let's stay united!Much love x

Makaton Monday

2011-08-08T19:27:00.002+01:00

Equipment Excitement

2011-08-07T23:16:00.001+01:00

We've had a very exciting week this week and one I've been dying to share! We received a phone call on Monday from Bee's physio to say that the walker we've been waiting for has finally arrived!! Excited? I could barely contain myself!! Thankfully Foz was off work that day so we were able to go down and collect it together as a family. The phone call came mid-morning and the physio said she could

Bedtime Bee!

2011-08-07T19:39:00.000+01:00

We've had a lovely little development recently and it never fails to make me smile. Bee has started saying 'bed' (ba) and making the corresponding Makaton sign. I'm always thrilled when Bee learns a new word or sign but this one has become quite special. A couple of weeks ago I was in the kitchen, putting some dirty clothes in the washing machine and folding the clean ones. The living room was

Letters

2011-08-07T16:54:00.000+01:00

We've had a couple of letters of importance recently. We usually get a few a week addressed to 'The Parents/Guardians of Bethany F....', they tend to be appointment letters, or summaries of recent reviews. The first we received last week, however, was different. It was a letter from the nursery Bee will start attending in September. We'd be waiting on confirmation of the hours Bee will attend

Bee's Dictionary Updated

2011-08-06T21:46:00.002+01:00

Word Sounds LikeYes YeahNo NaowTa GaaThank you Guy-or / Guy-ooCar Bum bumBall A-bawl Monkey Ooo oooAll gone Uh gnnnBaby

Stockley Farm Park

2011-08-06T19:13:00.010+01:00

Last week was an extrordinarily busy week for us so I've been a little delayed in blogging our latest news. I've got lots to share though! Monday 25th July brought Foz's birthday and we spent it in the glorious sunshine in the company of some lovely friends. We arrived at Stockley Farm in the early afternoon and met Clare, Ric and Isla in the carpark. The farm is part of a large Stately House

Thankful Thursday

2011-08-04T19:28:00.000+01:00

♥ sunny days ♥ Vimto ♥ physiotherapists ♥ days off work ♥ dry shampoo ♥ cups of tea ♥ my Grandparents ♥ Mr Tumble ♥ Bee's walker ♥

Makaton Monday

2011-08-01T22:03:00.001+01:00

Foto Friday - 29/07/11

2011-07-29T21:46:00.000+01:00

Happy Friday everyone!

Thankful Thursday

2011-07-28T18:27:00.001+01:00

Sometimes I can lose sight of the good things in life and get a little bogged down in the negative. So to try and balance that each week I'm going to ackowledge the things that have made me feel grateful. So this week I am thankful for: ♥ Orchids ♥ Vimto bon bons ♥ cups of tea in large mugs ♥ birthdays ♥ rollercoasters ♥ Pom Bears ♥ Twitter ♥ good friends ♥ classic films ♥ blogging ♥ It's been a

Makaton Monday

2011-07-25T18:55:00.000+01:00

Fist makes a circular motion over the chest.

Update!

2011-07-24T00:18:00.000+01:00

I must apologise for being such a lax blogger of late, I started researching my family tree and have found it so absorbing. Bee has made some good progress of late. She has a new word: please, which sounds like "pease", or sometimes "pease-a" and has also learn the Makaton sign to go with it. Bee has also started to copy words and phrases she hears us say. Whilst trying to encourage Bee to say "

Foto Friday - 22/07/11

2011-07-22T22:42:00.002+01:00

Me and my girl..... Having cuddles with my sleeping angel. Having some luch after our initial genetics appointment at Alder Hey Childrens Hospital. Cuddles at the park on Mothers Day. Bee having her first pair of glasses fitted. My girl is my life.

Makaton Monday

2011-07-18T22:37:00.001+01:00

Bee's new word: Very similar to 'thank you'. 'Thank you' is a short movement from the mouth, and 'please' is a longer one. The way we remember it is "please to the knees"!

Foto Friday - 15/07/11

2011-07-15T15:15:00.000+01:00

Bee enjoying the sunshine in her paddling pool! Making waterfalls! Bee enjoyed her time in the paddling pool very much. She's made huge progress since the day water began to terrify her and will now tolerate pretty much anything except having her hair washed. This makes our lives easier and Bee's much less stressful, which we're grateful for. Next step will be a swimming pool. Fingers

Makaton Monday

2011-07-11T22:19:00.000+01:00

Today's sign is one Bee has yet to master: Bee continues to do well with her eating, making progress, albeit slowly. We've discovered she loves the pastry from sausage rolls, potato and has acquired a taste for toasted teacakes. And as always there is her abiding love for Pom Bears. Although we are still struggling with her chewing technique we have no choice but to push onwards; Bee will not

Foto Friday - 08/07/11

2011-07-08T22:19:00.000+01:00

This week's Foto Friday doesn't have a theme in particular, they are all photographs taken from my phone: 28/08/10 - Foz and I on our way to Wembley to watch our beloved Warrington Wolves win (again!) 08/09/10 - Bee enjoying her paddling pool in the sunshine. 24/11/10 - Bee and I getting her new glasses fitted 28/02/11 - Bee does not like sand. On the beach at Talacre, Wales 02/

Bee's Dictionary Updated

2011-07-06T20:05:00.003+01:00

Well summer is perplexing us once again and we've gone from sunshine and sunburns to clouds and coats. We've had a quiet few days in the Foster-Bryant household, with an exception for our lovely trip to see Clare & Isla yesterday. Over the last few weeks Bee's vocabulary has expanded so I thought it time to update her dictionary: Word Sounds LikeYes

Special Friends

2011-07-05T23:20:00.001+01:00

I started this blog about a month after we'd received Bee's Kabuki diagnosis. I was feeling a little lost at the time, instead of indulging in support from others I found myself having to explain to all and sundry about Kabuki Syndrome. Even Bee's doctors and therapists.I'd registered with Contact-a-Family, contacted all the KS families on there but a month later still had no replies. I googled

Independence Day

2011-07-04T23:24:00.000+01:00

Since having our diagnosis of Kabuki Syndrome we've found (and been found by) so many wonderful families all over the world. Today I would like to extend special thoughts to all my friends in the United States who celebrate their national holiday today. Whether you're at a parade, party, BBQ or just simply being at home with family, I hope you have a wonderful time with those you love. Happy 4th

Makaton Monday

2011-07-04T23:11:00.001+01:00

Today's Makaton sign is 'no'... Open hand in a single movement across the chest.

New Challenges

2011-07-03T00:11:00.000+01:00

Well we've had a lovely day in Leeds today, including a trip to a fabulous new playground at Temple Newsam and visit to family. Bee came home absolutely exhausted. I'd like to say this was Bee this evening. But it wasn't. The last two mornings we've found her sat on her bedroom floor, surrounded by scattered objects, toys and clothes that she's pilfered from the various cupboards, drawers and

Foto Friday - 01/07/11

2011-07-01T22:36:00.008+01:00

Gosh is it really July already? As Bee gets older times seems to fly faster and faster. My baby is turning into a little girl before my very eyes. This week's Foto Friday is taken from our trip to Beeston Castle, Cheshire in Febuary 2011. Beeston is a medieval castle, dating from 1220 and is now mostly in ruins. Known as 'The Castle of the Rock', it's built on top of a craggy outcropping and

And the Winner Is.....

2011-06-29T22:41:00.000+01:00

This morning brought Bee's appointment with her physio. I've been looking forward to and dreading this appointment in equal measures, knowing it would most likely end in a battle of wills over the walker that I think Bee desperately needs. I made a point of allowing Bee to walk into the therapy room with her little toddle truck, I wanted the physio to see how small it was for her and how much she

Stand Up & Shout!

2011-06-28T22:49:00.001+01:00

I think I'll just let this video speak for itself:(Excuse the quality, done on my phone) Bee has been doing this for a couple of weeks now and is getting stronger every single time. Frustratingly she will only do it when she thinks nobody is watching, if you encourage her or make a fuss she promptly plonks her bum down on the floor. We're so very proud of her though! Tomorrow morning

Makaton Monday

2011-06-27T21:12:00.001+01:00

A new feature to help bring Makaton to people who may well not recognise it. Starting with one of Bee's most frequently-used signs... Closed fist with a single 'knock' motion

F:UN - Families United

2011-06-25T16:41:00.001+01:00

This morning we attended the Saturday Fun Club of Families United, a fab charity in my hometown for children with special/additional needs. Taken from their website:The aim of F:UN is to provide children with sensory, physical and associated disabilities the opportunity to interact with other families and professionals, enabling learning and social support for all. It's a wonderful organisation,

Foto Friday - 24/06/11

2011-06-24T13:36:00.000+01:00

I have so many photographs of Bee that friends and family joke that she must be the most photographed child in creation. We even had to buy an external hard drive to free up some space on the computer. So this is going to be a new feature on my blog. Foto Friday won't be a post of any substantial length, just a time to share some of my favourite pictures of my girl, both new and old. As my girl

A Childhood Rite of Passage

2011-06-23T23:12:00.001+01:00

Today we reached a milestone in Bee's development. Well, kind of a milestone. Bee has been getting more confident recently as we encourage her more and more to use the toddle truck and walk instead of being carried. We can see the tiny improvements in her confidence as the days go by, it's painful slow but it's happening. Today we spent the day at my Grandparents and Bee was in her usual

Fun in the Sun!

2011-06-20T23:52:00.001+01:00

Well June has finally come good and we have some sunshine! Two days so far of glorious light and heat. This morning my girl continued to charm the pants off anyone who comes in contact with her and the SLT was no different! The result of this morning's appointment: Bee is understanding at an age-appropriate level! A massive achievement and one I am so terribly proud of considering 6 months ago

To Walker Or Not To Walker?

2011-06-20T22:51:00.001+01:00

Mummy & Bee go food shopping As Bee is not yet walking unaided we try to make sure she spends as much time with her toddle truck as we can. We take it everywhere with us, even a short walk from the car to the front door is good practise. Bee may walk stiff-legged and can only go in straight lines but she grows more confident by the day and we're hopeful it can only speed the onset of her first

Door!

2011-06-16T21:17:00.001+01:00

The successes just keep on coming for Bee at the moment and today we notched up another one. Whilst playing at her Great-Grandparents (Noo Noo & Gee Gee) this afternoon we had a moment when my Grandad needed to leave the room. As they live in a top floor flat with a staircase we keep Bee in the living room with the door closed when visiting, to prevent any accidents. As my Grandad left the

Small Steps

2011-06-15T23:47:00.001+01:00

June has been a miserable month, mostly dull grey skies and rain. The kind of weather to have the central heating on, not to get the paddling pool out. However, yesterday the sun decided to grace us with it's presence and it was relatively warm. We leave the front door open when it's warm, allowing a breeze to move through the house and Bee likes to put her toys one-by-one on the front step.

Squidging and Fighting

2011-06-15T20:55:00.004+01:00

Pokey pokey poke With Bee's sensory issues we've never had much luck with Play-Doh, or any kind of craft/messy play substance but recently we had a small breakthrough recently as Bee decided that Play-Doh is now the funnest thing *ever* in the whole wide world! I'm really happy as Play-Doh is going to be great for her fine motor skills, Bee lacks strength and muscle tone in her fingers and it

Bee's Dictionary

2011-06-09T20:06:00.002+01:00

Bee has 16 words now and although some of them are clear, many of them can only be understod by those that know her best. We're aware that her pronounciation may always be poor so I've been putting together a dictionary of Bee's words for people who don't know her so well. Word Sounds LikeMama Ma maDaddy

A New Beginning

2011-06-09T00:36:00.001+01:00

It has been a long time since my last post and I have recently felt the need to continue with Bethany's story. I'll make this post relatively brief, more of a quick catch-up than an in-depth story and will endeavour to blog more frequently from now on. Our little Bumblebee is now 2 years 9 months old and in September she will be going to nursery, a terrifying yet exhilarating thought. Last

Victories and Viruses

2009-11-30T17:42:00.001Z

So Warrington Wolves made it to Wembley. You could have floored me with a feather when the final hooter went in our semi-final against Wigan Warriors and we were the victors. We'd actually made the Challenge Cup Final! The Wire were going to Wembley! But that left us in a huge dilemma: we'd never left Bethany for more than a couple of hours and even then we'd only done it 3 times. But Warrington

A Mixed Bag of Fortunes

2009-09-16T20:08:00.001+01:00

We had a mixed day on the 24th August. Bethany had been off her food for just over a week, gagging and coughing when swallowing. This was totally out of character for her, she loves her solid food. Difficulty with feeding is par for the course with Kabuki Syndrome so it wasn't a big surprise but still disappointing as Bethany had been doing so well. That afternoon brought an appointment with the

These Boots Were Made For Walking...

2009-09-16T19:04:00.001+01:00

We've been having some progress of late. We thrill in every tiny victory of Bethany's and this one, although small, is a step (excuse the pun) in the right direction. Bethany has never wanted to place her feet on the floor. Whereas other babies, even from a very young age, will push down with their legs when placed in a standing position, Bethany never will. She draws her legs up and won't put

Money, Money, Money

2009-09-16T14:53:00.002+01:00