Foto Friday - 29/07/11

Happy Friday everyone!

Thankful Thursday

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 very busy week this week and I'll hopefully catch up in the next few days.

Makaton Monday

Fist makes a circular motion over the chest.

Update!

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 "Gem, where are you?" she managed "Dem, ee a ooo". Wonderful!

We're hitting a little snag with her language development though, as we've discovered Bee is using similar sounds for different words. For example, "ba" or "boor" can mean ball, bag, bed or book. Sometimes it takes a little detective work to find what she actually means and Bee can get frustrated. It's something I hope to raise with her SLT at our next appointment.

Physically Bee continues to develop slowly but surely. Still crawling and cruising strongly and now starting to take small, unaided steps away from the furniture. Every day we see Bee get a little bit further each time, although I think walking is still a long way off, her balance is quite poor. Her longest walk has been 6 steps before she lost her balance and fell, a huge achievement!

We're still waiting for the walker from the physiotherapist. I've rang twice and left messages but no reply or returned phone call yet. Monday will bring yet another attempt and each time I'm getting more irate at the lack of communication. Even just a polite "not in stock yet" would suffice, just so I know what's happening. Each day that passes is another day of restrictions and limited ventures.

Talking of restrictions: Bee is reaching an age where it's time to bake cakes and help cook the tea, yet she's way off being able to stand on a chair at the kitchen units. Her lack of balance and co-ordination just wouldn't allow her to do that safely, may never allow her to do that safely. We've been looking for something to solve our problem and came across this:

Little Helper FunPod

It's expensive, £112 on the official website and the cheapest I can find is Amazon at £95. They are supposed to suit ages 1-6 years and, with Bee being a little on the small side for her age and only 2-years-old, I think we'd get good value-for-money. I'd be interested to know if anyone has tried a similar product?

Enjoying some of her beloved Pom Bears

On the food front Bee continues to make small progress. Her ability to bite and chew food is slowly getting better although she still only consumes tiny amounts. We're certainly a long way from having the mic-key button removed. Bee still refuses to touch anything 'messy', much less eat it. So we're sticking to solids for now, despite the SLT's insistence that we start with puree. She doesn't have to feed Bee day-in-and-day-out and Bee enjoys her solids *a lot*.

We've been a little quiet on the appointments front recently but we have Occupational Therapy coming up on Tuesday. I'm not looking forward to it. Since discovering that the OT service in Warrington does not provide one-on-one help for children with sensory needs I've not felt very charitable towards Bee's therapist. I know it isn't her fault, decisions like that happen way above her, but she is the face of a service that is letting us down and I'm still angry.

Foto Friday - 22/07/11

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

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

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 crossed!

Makaton Monday

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 tolerate puree texture at all. She is constantly keen to eat though and we take that as a really good sign. With the exception of texture Bee doesn't seem to be a fussy eater at all, for which I am eternally grateful.

Foto Friday - 08/07/11

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

02/03/11 - Bee has a nap with dolly in the car

17/04/11 - Munching on a chip in a restaurant

Bee's Dictionary Updated

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 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

Hello                                Hey-yo / Hiya

Bye bye                            G-bye / Be bye

Dog                                  Uff uff
Food                                Num nums
More                                Moh

Bubbles                            Bu-bulls

*New*                             Sounds Like

Door                                Dior

Up                                   Up

Keys                                Daa

Bag                                 Ba

Play-Doh                          Bawl

Clare                               A-cah

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de / de-de

Grandma                          Gam-ma

Great-Grandma                  Noo noo
Clare                               A-Ka
Gem                                Dem

That takes her total to 27 words and not only is her vocabulary growing weekly, she is also stringing words and signs together.

My favourite of Bee's new words would have to be 'up'. In a morning, when I go in to her, she likes to say "up mama, up". How can anyone resist?

Special Friends

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 Google to death, searching for someone, something, anything, anyone who could understand and sympathise.

It became apparent that when the geneticist told us KS was rare, they'd really meant rare.

While we were still dealing with the repercussions of our diagnosis, we still had concerned family and friends wanting updates on Bee. She was still quite poorly on and off and we had a lot of therapy appointments, at the height we could have 10 - 12 a week. It was very difficult to constantly repeat her progress over and over and so I started writing 'notes' on Facebook, as a way of keeping our slightly more distant extended family and friends informed. To my complete surprise I started to find it a cathartic experience. Almost a cleansing of all my stresses and frustrations.

Which is how the blog came to be. A combination of keeping people informed of Bee's progress, hoping that a KS family somewhere would come across us whilst doing their own searches and a place to expound all the thoughts and feelings that come with having a special needs child.

 As time wore on it had become more and more apparent how isolating having a special needs child can be and I was so ready to talk to someone who understood. We attended playgroups but while all the other children crawled or toddled around, Bee just lay on the mats. We went to soft play for the same thing. While other parents were painting and playing dolls or cars, I was trying to get Bee to grip something, anything. I got so fed up of the sympathetic looks, the whispering and staring. A standard conversation would go:

Person: "Awwwww, how old is she?"
Me: "She's..." *insert age*

Person: ......*pause* "Oh" *pause* "She's lovely"

Usually followed by an awkward silence and me attempting to explain that Bee has special needs, almost like I needed to justify why my child couldn't do the things expected of her. It got very tiring and each time I found myself being more and more defensive. I would even snap "was there something you wanted?" at people who would stare at me tube-feeding Bee in public. I was not in a happy place.

Early in 2010, approximately 6 months after starting the blog, Clare found me. Finally, another mum! Someone to share, celebrate, support, commiserate.... I was thrilled.

 It turned out that Clare had a little girl called Isla, only 3 months younger than Bee and at a very similar stage of development. And, not only that, they only lived 20 minutes down the road!! I couldn't believe it. We'd gone from being completely alone to not only finding a new friend, but one that lived within meeting-up distance!

30/04/10 Bee & Isla's first meeting

We finally met in March 2010 at a local soft play centre. From the moment they walked in I felt at ease. Chatting with Clare was like chatting with an old friend, even though we'd only just met, there was no awkwardness, we had so much to share! Isla was just beautiful. A little shy and wary of me, but that was to be expected. Our girls could never understand that even though we were perfect strangers, we already shared a bond.

And so we chatted and swapped war stories, symptoms, quirks and habits of our girls and as the afternoon wore on I felt a sense of weight lifting from my shoulders. Like the burden suddenly wasn't so great as Foz and I didn't have to shoulder it alone. I left the soft play centre that afternoon feeling brighter than I had done in a while.

05/07/11 - The girl I adore

 Since then Clare has become more than a friend, Isla more than a lovely little girl (although she is that too!) They've become family. They've become an indispensable part of my life. So many times over the last 15 months or so, I've relied on their friendship and support. So many times I'd have been lost without it.

We've shared laughs and tears (both happy and sad), 'first' moments, cuddles, playtime and many many cups of tea (and a sneaky cake or two). We've set the world to rights in an afternoon. We've shared cuddles with Iggle Piggle and all the while we've watched our girls grow together.

Clare, Isla: Kabuki may be the reason we met but it's not the reason our friendship has continued to grow. I'm honoured to know you. Honoured to share our lives with you and know that as our girls grow we'll continue to face the world together in support, and more importantly: friendship. You are a beautiful person, with two beautiful children and I've never known a more wonderful mum and friend. You and 'R' do an incredible job.

Love you guys xx

P.S. I know you're crying - stop it! ;-)

05/07/11 - Bee and Isla swing away

Independence Day

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 July!

Makaton Monday

Today's Makaton sign is 'no'...

 

Open hand in a single movement across the chest.

New Challenges

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 shelves. This evening, after putting our tired little miss in bed, we came down ready to watch the taped Rugby League from earlier in the day. Cup of tea in one hand, bag of popcorn in the other, remote at the ready... let's go!

Then, through the monitor: BANG!

We made our way upstairs to find Bee, sitting amongst the detritus of her impromptu play session. She'd managed to clamber out of bed and create an impressive mess in about 10 minutes. Thankfully the bang was a toy on the floor and not her falling out of bed!

So, now, a challenge: how do we keep our little minx in bed?

Foto Friday - 01/07/11

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 surrounded by steeps cliffs on 3 sides. A truly magnificent place.

The multi-towered curtain wall defends the huge outer bailey. This is a massive expanse of space which climbs steadily up to the inner bailey.

The modern bridge leading from outer in inner spans a deep ditch and is further protected by a massive gatehouse.

 

Bee exploring the outer bailey with her Daddy.

 

The inner bailey boasts one of the deepest wells in any castle in England, over 100ft deep. On a clear day you can see 8 counties from the castle's summit, from the Welsh mountains to the Pennines.

 

English Heritage - Beeston Castle & Woodland Park