Tuesday, 8 April 2008

update on moorfields

So yesterday morning me and my babe were up with the larks and out of the door by 7:15. Went and collected mum and went to the bus top to go to London.

we sat near the back so we were near the toilet for Bryce lol never again. someone done a poo....it made the whole bus smell and i had to breath through my mouth for 10 minutes lol.

We got into London after 4 hours. my boy was a star and didnt cause one bit of fuss for the whole trip. went and grabbed a quick coffee and snack then set off again.

As you may or may not remember my mum has reumatoid arthritis, so she was scared to go on the tube so we opted for a taxi as neither of us really knew where to go. £20 it cost, i nearly passed out on the spot.

got to the hospital and straight away you can see the difference between nhs and going "private". no rooms full of people waiting, no waiting about, everyone who talked to us smiled and made us feel special.

The first person we saw was the ortoptist. she was lovely and was very good to Bryce. We then went on to see the consultant. she also was an angel and very good with my babe.


He has a stigmatism, the eye isnt round but oval-Ipswich have never told me this

He has a lazy eye- again never told this before.

He see's through his bad eye in 2D as apposed to 3D- undigagnosed before.

He has a very small optic nerve- never told this at Ipswich.

He has got periferal vision (can see out of the corners of his eye) but cannot see properly what is right in front of his nose.

The consultant went on to say there are lots of tests they want to do as she genuinly wants to help my boy and can see its killing me inside that we have been let down so badly by the local hospital. She was actually appalled at the way he had been treated.

As she was telling us about these tests all i could see were £ signs and was wondering where on earth i was going to find all this money as i couldnt expect my mum and dad to pay for it all, so imaging my surprise when the consultant straight away told me she was going to put him on her nhs list so we dont have to pay anymore money!

So in 5/6 weeks time we will be making the trip to London again to see her again. we will then have to go back to have electrical tests on his brain, and then sometime after that he will be admitted as they want to do a brain scan to get a proper look at this optic nerve.

You must of all had your fingers crossed for me yesterday so thank you so much for that!

we will be going on the train next time lol although its double the price of the taxi its only a mile from the hospital so we wont have massive taxi fares to pay!

Charlie has just left for his new school so i will feel sick all day. Bethany has got an appointment at hospital today for her heart.

Take care love you all


ps is this the longest entry i have ever written lol

Sunday, 6 April 2008

ok so the last few months have been colourful to say the least.

had loads of trouble from my boy charlie. the condensed version is that he really hasnt been able to settle in the high school. we have had various incidents ranging from bullying to the school even "lost" him one day, although he wasnt really lost he was there all along, the comunication between the teachers is obviously awful. Was a pity they didnt realise he was ok before my mum and the local policeforce were all out looking for him while i went into meltdown in the policestation. he has been asulted there several times so i decided to pull him out 2 weeks before the easter holidays started.

He is starting a new school on tuesday so please send him positive thoughts poor boy!!

Bethany has been generally ok with nothing to report so thats good.

Bryce has been ok too! still having his accidents on a weekly basis...... me and mum are taking him to Moorfields private eye hospital tomorrow as are local hospital have basically given up with his eyesight and have resigned themselves to the fact that he is going to go blind in his right eye. I, on the other hand cannot believe this can be allowed to happen so we are going to see what they say tomorrow. fingers crossed for that as well!

On to me! Nothing to report lol. still plodding on as ever. have joined the gym and am being very good with what i eat. have lost over a ston so far. only another 4 to go "sigh"

had an excellent night last night at the lions club swimming gala. its specifically for people that have a dissability. Bethany has been going for years. Charlie done it as well yesterday for the first time. I felt a bit sorry for the other people as he won every race he went in as he is like a dolphin, but i was proud all the same lol.

Bethany done really well also and was even presented with a trophy at the end of the night for trying so hard.

Bethany getting her award.

enjoy the pictures!

If theres anything else you want to know just ask!!!!

I'm still a reader....but am mostly silent lol

lots of love Joanne

Tuesday, 1 April 2008





Is my journal still on anybodys alerts?

If it is i will start writing again.

Leave a comment if you get this.......please!!

Hugs to everyone