Saturday, 27 November 2010


27 November 2005

Saw the "very swift and stressful" arrival of

Emily Jean - weighing 3lb 8oz

So, today please join us in wishing our brave, beautiful and simply amazing little princess



Tuesday, 16 November 2010


Mummy wanted to just drop by to say "Hi" to you all

Sorry for the delay in updating my blog page and keeping you all up to date with what's happening in our world at present. 

Life is pretty manic at the moment with 2 jobs, 2 college courses, 2 kids and 1 husband - not to mention throw Christmas in to that equation too ~ if I was to say "I'm meeting myself coming backwards!!"  I'm sure you all understand.

I have lots to blog about ~ which I will hopefully get adding soon.

I just wanted you all to know that all is good here and that I haven't forgot about you all.

Emilys Mummy ~ Tracey x

Thursday, 7 October 2010

"That Subject"

I just wanted to share with you a little something that has really excited me this past week!

Emily has finally done a pee pee and a poo poo on the toilet - YEAHHHHHH this is huge progress in that department.

We are still getting plenty of "accident" clothes to wash - you know she likes to keep me busy....... but I am so proud of her achievement.

Baby steps of progress mean the world in my world!!

Wednesday, 29 September 2010

Your Child's Love

It's easy to complain about the things you don't have, and overlook or take for granted the things you do - simple things that enrich your life!

Maybe this story by Dr James Dobson will help change your perspective. 'Some time ago a friend of mine punished his three-year-old daughter for wasting a roll of gold wrapping paper. Money was tight and he became upset when she tried to decorate a box to put under the Christmas tree. Nevertheless, the little girl brought the gift to her father the next morning and said, "This is for you, Daddy." He was embarrassed by his earlier over-reaction. But his anger flared again when he opened the box and found it empty. He shouted at her, "Don't you know that when you give someone a present there's supposed to be something inside?" The little girl looked up at him in tears and said, "Oh, Daddy, it's not empty. I blew kisses into it. I filled it with my love and I wrapped it up just for you." He was crushed. Quickly he put his arms around her, hugged her and asked for her forgiveness. My friend told me that he kept that gold box by his bed for years, and whenever he got discouraged he'd take out an imaginary kiss and remember the love of the child who had put it in there. In a very real sense, each of us parents has been given a gold container filled with the unconditional love of our children. There's not a more precious possession anyone could hold.'

Monday, 20 September 2010

somewhere over the rainbow

find happy3

At the end of my rainbow is a different place.  A place where all the parents of special needs come together to hold hands.   

The hardest thing I have found as the parent of a child with special needs - is the feeling of being alone - of thinking people don’t understand.  But having the support of other special needs priceless.   With them, we know we aren't alone. 

We will take this journey one step at a time - not focusing on what is down the road a ways off, but knowing in our hearts that whatever does wait for us will continue to wait. And it will be okay - no matter what.


At the end of my rainbow is a different place.  A place where all the parents of special needs children come together to hold hands and see the world from a different & amazing perspective.

With love,
Christina @ Pooh's Corner

Saturday, 18 September 2010

Oh so.....


It's tiring work going to BIG GIRL school!!

By the time we made the journey home yesterday she was fast asleep...

Our second week as been a great success too..

Next week she starts full days at her mainstream setting - wonder how tired she'll be by next Friday!

Wednesday, 15 September 2010

Being a Guest

I received an email last week from a special Mummy of a little girl with the same rare syndrome as Emily, inviting me to be a "Guest on her Blog", although excited by this invite ~ I'll be honest I had no idea what this actually meant - so Christina explained that she would like me to do a blog update but on HER blog!

Very exciting.......... but the responsibility worried me!!  I'm no computer expert, certainly no website designer and certainly do NOT class myself as being in the same league as my blogging friend.  I was terrified I made a mess of her wonderful blog, as believe me, her website and blog page are professional and beautiful.

Hmmmm - you know me and responsibility - a challenge is exactly what I like - so I jumped at the chance!

I wanted to share it with you:

Wow - the world of blogging is a wonderful thing - you ought to try it one day!

Monday, 13 September 2010

So How's School?

Continuation from my last post - that day did come - you know THAT day that I was dreading!!

The day that Emily started "BIG" school.....

So here she is on her first morning with Joshua (her big Brother)

Does she look like a little girl who doesn't want to go to school?
Does she look nervous at all?
Do you think Mummy was looking this happy?

I was a wreck, I mean we have fought so hard for Emilys educational settings and with a wonderful team of professionals - we got what we requested BUT that responsibility is huge when it may not work out or your child may not even like it.

So - this was her first day... this is her support worker who will be helping Emily in this mainstream setting

On a Monday and Tuesday Emily will be here..... Mainstream with support - wearing her GREEN uniform [this is the same school as her Brother]

For the rest of the school week she attends a local Special School - wearing a BLUE uniform
{her support worker above actually works at the Special School in Emilys class}

Our overall aim is to continue with this Dual Placement until Emily can tell us herself where she prefers - who are we to make that choice for her?!?

As parents of a child with additional needs / disabilities it's a huge responsibility to know what is right, so many things to consider - from happiness to achievement, friendships to specialist services etc etc - it is NOT easy.

Just as I'm leaving her on her first morning - I say bye..... she looks at her support worker for reassurance but she's still smiling ~ no tears from my little girl.

When we picked her back up again - they looked as if they had been busy and had lots of fun!

No rushing her out of the playground either - she wanted to sit in the summer house watching the cat!!




Monday, 6 September 2010

The Next Chapter....

I really cannot believe the summer holidays have passed this fast!

In our house this evening all is quiet

Everything is still


Tonight is the night before one of the biggest days of our Precious Princess's life

Twas The Night Before.....


The uniforms are labelled, ironed and hanging nicely

Emily is getting some sleep {for now anyway!} ready for her BiG day

Emily seems VERY excited, we have "talked/signed" about it alot these last few days

Hows Mum feeling I hear you ask "I'll answer that one tomorrow...."

let's hope and pray we made the right choices for you


Tuesday, 31 August 2010

See ya soon......

Quality time away with your family ya can't beat it....... who cares what's happening back home!!

See ya soon


Friday, 27 August 2010

You'll Never Guess!

Don't suppose you need 3 guesses to get where we've been this summer ?!?

Of course - Disney

Lots more photos WILL follow of course!

This year it was Euro-Disney, Paris - fingers crossed 2012 will be the real thing [ssshhh Mums 40th celebration so don't tell her!!!]

Hoping to get to meet up with some of my siblings new friends when over in Florida too.

[if you live Florida way and have an interest in my blog / syndrome would be great to meet you - send me an email sometime]

Monday, 23 August 2010

Eyes / MRI Update

We now have the MRI results and have seen Emily's Consultant Ophthalmologist.

Now Emilys brain has grown (her last MRI when she was 15 months old), it is definately more obvious that she does have some abnormalities.  The changes are consistent with Periventricular Leukomalacia, so this isn't new information for us - we already knew this was a possibility from her first scan, but now it is more obvious - so I treat this as just confirmation.

It does appear that Emily has had a bleed on the brain at some stage, which we didn't know.  This could have been due to her prematurity or could be something that has happened during a seizure - we don't know.  What the Consultant does know is that this is probably the reason Emily has the visual perception difficulties and squint.  The optic nerve runs close to the area affected by the PVL and the bleed.

They will continue to monitor Emilys vision for now and possibly repeat an MRI when shes older to rule out degenerative disease.  Her Ophthalmologist Consultant is wanting to do a Kestenbaum procedure (surgical procedure on the extraocular muscle indicated for patients with torticollis associated with nystagmus) to adjust Emilys abnormal head posture when she is older and at that stage will incorporate correction of her squint.

I don't want to make this too much of a serious post - life isn't always about serious!!! 

Happiness is the most important thing - does she look happy to you?

With love to all my readers xx

Friday, 20 August 2010

Patience Please

I just wanted to stop by to do a quick update.

Your patience with my lack of posts is very much appreciated.  I had surgery on my left hand on 5th August which in "simple" terms ~ has gone wrong!!!  The anaesthetist didn't do his job properly so half way during surgery......... I wont go in to detail but lets say was rather painful.  I have lost all touch sensation in two of my fingers and I'm in constant pain.

Hence my reason for not posting.  Typing one handed is a little tedious, my pain relief medication is knocking me out so I feel so tired all the time and mentally I just don't feel up to it!!

Promise I will back very soon ~ just didn't want you to think I'd given up..

Tuesday, 3 August 2010

My Gift

Ok....... so this post is following on from my last one. "Thank You Siobhan"

Where I shared with you the lovely present we had made for Siobhan as a way of showing our appreciation for all that she has done, for not just Emily, but, for us as a whole family.

Now I would like to share with you the beautiful gift that Siobhan gave to Emily on her Graduation Day.


[I'm thinking I know of one person who may just love this!!]

Thank You Siobhan - we love it........ and will cherish it always.

A card accompanied the gift, this is what it said:

Dear Emily
Good Luck in your new school
It's been lovely getting to know you, and remember
You and Me are friends forever
Lots of Love

[Oh no ~ crying again!!]

Wednesday, 28 July 2010

Thank You Siobhan

I am sure from my previous posts - you will be realising that I am very sad that it is time for Emily to move on to pastures new....... [excited but sad]

You will have now guessed that Emilys one-to-one Support Worker Siobhan was [is] amazing

So I just wanted to share with you the gift we gave to her when Emily finished her Graduation Concert last week....

The Exchange

We had a photo book made of her time spent with our Special Daughter, they built a lovely relationship together and I know Emily will always have a special place in her heart, so what better thing to have other than memories........ photographs [how did you know I was going to say that!!!]

Siobhans response {whilst crying of course}

"Thank You ~ I will cherish it forever"

Monday, 26 July 2010

Graduation Day..


Yeah - you heard me correctly......

Last Tuesday it was Emily's Graduation Concert at her pre-school and what a fantastic concert it was too...

[I'm sorry it has taken me nearly a week to post this ~ if I'm honest I've been a tad emotional for the last week........ so just couldn't face doing much really]

Now these pictures aren't great ~ sorry ~ my camera doesn't cope with the dark!!

Emily front right - in pink shorts, up doing her bit!!
Emily taking a bow - to the left of lady in red {Siobhan}

The children sang songs for us - some in sign too

They danced for us - Emily joined in too [in her fashion], this was a massive achievement for her as on all the rehersals she wouldn't attempt to join in with the dancing

They enjoyed making their parents very very proud




Emily very proud - receiving and showing off her certificate

Look at that grin!!!!!  Is that one "proud of herself" face or what?

The lady she is with is Siobhan, her support worker [I'm sure you already know that], that grin is probably for her.......... Emily knows just how proud Siobhan was of her..

We also got to say "good-bye" to all of her special play buddies ~ the staff, who we are going to miss very very much.

What a tear jerking day this was...... a brilliant day though....... and another day of being immensely proud of you Emily Jean

Tuesday, 20 July 2010

Oh Boy ~ what a day....

I'm doing this quick update as I'm sure a lot of my "pre-school" friends may be checking on here for todays events..............


Today was the concert at Emily's pre-school for the leavers [that's all I'm saying right now - post to follow]

Also Emily had an assessment for a communication device this morning [again a post will follow]

Then this evening was open evening for parents at Joshua's school

The results from Emilys MRI scan arrived also!


So I'm going to bed
I promise I will post tomorrow.......


Friday, 16 July 2010

Nearing the End :>(

The end of our school year is fast approaching....... gosh that means my handsome little boy will be heading in to Juniors after the summer - growing up so fast.  I occasionally have to stop for a moment just to watch him, I can't believe how fast he has grown up.......... part of Joshua's life is a slight blur to me, when Emily was more in hospital than not and then the hecticness of life sometimes just seems to take over and you miss things happening right before your eyes!!

Also, A LOT of changes will be happening for my Precious Princess.  She will be leaving the pre-school that she has been attending since April 2008 - to move on to ventures new.

St Marks Pre-school

Emily appears to be taking everything in her stride......... visits to her new school, professionals popping in and out to see her to finalize their reports - she knows something is going on, but she's doing OK.

These are the two schools that she will be attending

Mummy on the other hand is not!

Mummy doesn't like change!!  Mummy is pretty much scared out of her mind........ but putting on a pretty brave face to the outside world [like us Mums do].

I'm scared of changing what has been working.

I'm scared of losing the incredible team that we have helping Emily to meet her potential.

In particular I'm scared of losing Emilys support worker SIOBHAN.

We have built up a brilliant relationship and I know I'm going to miss her just as much as Emily is going to.  I am going to miss all of the staff at St Marks, they have become my friends it feels!

Obviously, I've got to stay positive and look forward....... I've met Emily's new support worker who will be working with her at both settings from September, she is lovely also, so I know things will be OK...

I just aren't very good at GOOD BYES [sat crying right now at the thought of it!!!]  I'M SUCH A BIG SOFTY.

I am also going to miss all the other parents and children at Emilys setting - some of which have given me a lot of support during these last 2 years - for that I am truely grateful and feel blessed to have met such lovely families - if you are reading this "Thank You".

I will apologise now......... if I don't say Bye next week............. if I make a point of avoiding you........ I'm not being ignorant............ I just don't do Good~Bye's.