Friday, 25 June 2010

Pre-op Yesterday

You will recall my post with regards to the wobble Emily has developed in her eyes (Nystagmus) - if not you can view it here.

Well the date for the MRI scan has quickly arrived :>(     Her appointment is on Monday at 10:15.

We had her pre-op appointment yesterday, she had to have this as unfortunately due to her age, learning disabilities and sensory issues Emily has to go under general anaesthetic for the MRI and eye examination to be carried out.

The nurse I saw advised that the MRI and then immediately afterwards the eye examination would probably take around one and half hours perhaps a little longer.  {gulp} that's an hour longer than I had anticipated!

I would be lying if I said I was OK and calm about Monday, I'm not!  It's common knowledge that anaesthetic and epilepsy are not a good mix.  I have requested that I am present - so I can see for myself that she is OK in that tunnel, with the history of Emilys seizures I need to be 100% sure that she is out of that machine pronto so her rescue meds can be given if needed.

I am sure everything will be fine - but please just give my little angel a prayer on Sunday evening can you?

Monday, 21 June 2010

My Baby Boy...

This is my baby boy - JOSHUA

Well today I think the reality is certainly starting to hit me.....

He's certainly walking away from the baby days now
my handsome, gentle and caring boy with such a funny sense of humour

He is certainly growing up!!

Today my baby boy

(I have no idea where those 7 years have gone!!)



No party this year........ we celebrated it in Euro-Disney instead (photos to follow)

Monday, 14 June 2010

Mr & Mrs Bamforth.....

On Saturday, 12 June 2010 - Emily came along with myself, my Mum and my Sister-in-Law for a "girls" morning................ to see my dear friend Michelle arrive at the church for her big day.

The Wedding was to commence at 12 noon (Hmmmm - I think Michelle needs a new watch), so whilst waiting we played a few games.

(Who can run to the tree first / Finding "big and small" things, so Emily found the tree for big and this daisy for small / then the waiting was getting too much so Emily plonked herself down on the grass!)

Obviously before The Bride did arrive - Mummy managed to keep busy snapping elsewhere too

                                                                                         ALLAN - the groom (on the right) - (Allan is my ex-boss too)He's trying to look cool - but I will confirm he was as nervous as hell, he kept rubbing his hands together (first class sign!)

Then these two showed up!!!  Trying to look all professional of course!!!  Truely they did an amazing job, dashing here and there, not keeping still for a second trying to capture every special moment - memories to treasure forever.  (INSIGHT PHOTOGRAPHY) - just incase anyone is interested!! - No I'm not on commission (lol) - The cute ass was not intentional - honest!!

Then the Bridesmaids and Page Boys arrived
I'm sure you will agree they look amazing

The next arrival was this car - which was just FULL of dresses!!  Couldn't see faces - just dresses LOL


THE BRIDE, my dear friend Michelle - you looked stunning and
her little girl "Princess" Poppy - equally as beautiful

(you will note on one of the pictures above - that infact this was as much Poppy's day as Michelle and Allans - the Bride is actually having to sort out the Bridesmaids dress - so cute!!)

The Brides Parents - Colin and Tina

Even a traditional Chimney Sweep - how fab!

and off she went - "FAREWELL MISS MERRYLEES" xxx


PS:  The party was amazing - thank you, I had a ball


Friday, 11 June 2010

Communication Matters

As you read the title of this blog "Communication Matters" you are either wondering what an earth I'm talking about, or, you're saying "Yes of course it does".

For those of you who don't know, one side of Emily's development which has been severely affected is her ability to speak.  The speech seems to be a huge part of this syndrome.  The other families I am now in contact with around the globe confirm this with their own personal experiences.  I know of one adult who is still completely non-verbal, some of the older children can speak fairly well and others who may have the ability to hold conversations with short sentences now struggle with stuttering etc.

Emily is now age 4 years 7 months - her spoken language consists of 7 words:~

Mama      Papa      More      Yes      No      Bye      Hi-ya

We have been doing Makaton sign language with Emily since she was 2 years old and she has quite a large range of signs she uses now, however, her fine motor skills are so poor that her signs are approximations.  We can understand her but unless you knew Emily and had had time to get to know her signs or was totally involved in the context of the signs, you would struggle to understand her.  We do have our moments when even we can't understand her ~ it's these times that break my heart.

Emily understands EVERYTHING that is said to her, granted it sometimes takes her a little time to process the information but she gets there in her own time. 

The only way I see things when it comes to Emily and her communication is - she is a bright little girl trapped in her own mind, can you imagine knowing exactly what you wanted to say but not being able to say it, and no matter how hard you tried no-one could understand you??  "Can you imagine that really ??"  Not only is it extremely frustrating (on both sides, for Emily and whoever she is trying to communicate with) but how frightening that must be for her too.  As her Mummy, it terrifies me, it terrifies me that Emily's emotional state is definately being affected by her fear when I'm not around and more importantly how vulnerble it makes her.

I remember one family telling me when her daughter did start being able to hold basic conversations, she actually brought up something that had happened many years earlier - it had been trapped up there until she was able to verbilize it........

After receiving the diagnosis last year and realising that Emilys lack of progress in her speech was something to take seriously and not just presume that it would come eventually, I spoke to her (then) Speech & Language Therapist about considering other avenues.  She took this seriously and referred Emily for an assessment with a SLT who deals with AAC (Augmentative and Alternative Communication), this happened last November.  It was a very positive assessment - Emily was moved on to using symbols, of which she now has her own symbol book, as a stepping stone to move on to a device at a later stage if still required.  Without going in to details - the stepping stone process seems to have come to a stand still, a change in educational setting, a change in SLT, lack of communication, incomplete notes etc etc seem to have caused the problem ~ which you will appreciate frustrates the hell out of me.  So......

We decided as parents we would see for ourselves what is available.  This week we attended a Communication Matters Seminar at the Leeds Metropolitan University, to look at various communication aids available through various companys and even got a hands-on play with many of them too.  WOW and what an impressive day it was.  I must admit some of the equipment available Emily could have made very good use of a few years ago - it does make you question the "system" a little, the only excuse for this equipment not being accessible for children like Emily boils down to one thing "MONEY".  It breaks my heart.

We aren't going to stop here - I am still awaiting confirmation that a further assessment date has been arranged, if this doesn't happen then we will go ahead without their support.

Emily is our Daughter and we need to fight for anything that could make her life easier.  Being able to communicate better could make a huge difference for her - socially, educationally and emotionally.


"Children who are unable to communicate effectively through language or to use language as a basis for further learning are handicapped socially, educationally and, as a consequence, emotionally."
(Byers-Brown & Edwards, 1989)

Tuesday, 8 June 2010

9th June 2001

{9 years ago}


There have been a lot of changes in our lives since that day

The storm hasn't always been an easy one to ride

In some ways the day seems like yesterday - but then when I think of the journey we have been on and look in to those "un-knowing" eyes it seems a different lifetime ago!!


for better or for worse
for richer, for poorer
in sickness and in health
to love and to cherish;
from this day forward until death do us part.

Here we are ~ 9 years on ~ with two amazing children that our love has created

and I couldn't ask for more

Monday, 7 June 2010

Trip to A and E....

Emily was due to be at two birthday parties yesterday {her social calendar is better than mine these days ~ he he}.

Unfortunately, when she got up she seemed to be poking at her right eye more than usual - initially I couldn't see anything.

Mid-morning her eye was watering quite a lot and again the poking started, so I had another look.  Yikes - she had a full hair (from her head) curled around inside her eye - at this point it was actually going directly across her pupil 2/3 times!!!  Now I struggle with eyes and Ian is even worse than me!  I tried so very hard to remove it without hurting or frightening her but to no avail, so it was a trip to the pharmacist first - who then directed us straight to A & E.

Two doctors {young doctors at that ~ or is that just a sign that I am getting much older??), a nurse and the play therapist tried to remove it with both Ian and I trying to keep Emily still - shall we just say she was not a very happy bunny.  In the end we had to stop in fear that she may have a seizure as she was getting quite hysterical about the situation.  We left the hospital with the hair still in her eye, with some cream to try to keep the eye moist in the hope that the hair would work its own way out and her eye wouldn't get scratched.  An appointment has also made for us to attend the eye clinic - the earliest they could do is Thursday.

We managed to make the last hour of the 2nd party, poor Emily, I was so upset for her.

I managed to put some cream in her eyes once she had dropped in to a deep sleep last night - she just wouldn't let us anywhere near her eyes after the hospital.

GOOD NEWS ~ a tiny piece of the hair was sticking out of her eye corner this morning so I managed to slide it out completely!!  I'm glad it happened that way - I needed to personally see that hair coming out of her eye for my own sanity.  PHEW....

Friday, 4 June 2010

Honey Bunny

At Emilys mainstream pre-school they have been purchasing a build-a-bear (or in this case build-a-bunny) - wearing a school uniform ~ it's so cute.  You can change the bunny accordingly to wear a little school skirt for a girl or little school shorts for a boy.  The children who are leaving St Marks next month, who are moving on to "big" school ~ Emily included (scary times ahead!!) have been given the chance to take Honey Bunny home with them for a sleep-over.  They have to keep a little diary of how they looked after Honey Bunny - just recently it was Emilys turn.............................

Meet Honey Bunny

Of course all of the children are enjoying their time with this new special friend {which they will soon have to say bye-bye to}

Emily certainly gave Honey Bunny lots of cuddles - she can't speak, read or write - but she has definately mastered the art of cuddling {Mummy is a good cuddler too!!}

They got cuddled up in bed along with some of Emilys other special friends for a nice bed-time story