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!!]