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|just to let you know that we are of for a few days break now so will not be able to send any messages untill monday or tuesday |
but we will be thinking of you and send chloe all our love and thoughts
Location: Wales (UK)
|I just want you to know, that we are all thinking of you over the next few days. I can only half imagine how you must be feeling, but I want you to know we are hear if you need ANYTHING. |
trace, Jonny and Reuben
|Hi everyone, thanks for your messages after Hannah's surgery was postponed. Sorry have not been on for a while, just catching up now. |
Keith and Tina, I am pleased that you have a date for Chloe's surgery but I can really imagine how you are both feeling right now, especially as Hannah's surgery was scheduled for 21st Feb. I know how worrying it is but it sounds like she is a fighter and strong little girl who has pulled through so much already, so hopefully all will be well. I do think the Dr's give you the worst information so they cover all angles. I know when we had Hannah's pre op checks and our consultant was explaining what could go wrong (things like paralysis and breathing probs, not surviving the procedure etc), I got really upset thinking that she might go from being a healthy little girl to not being able to move or whatever, but you can't think like that too much or it would drive you mad. Anyway, if you get this message before her op, please know we are thinking about you, and sending our love and best wishes - we really really hope all goes well and that Chloe pulls through and recovers well.
I also had sleeping problems (particularly when things were leading up to Hannah's op), I would wake in the night and lie there for ages just churning things over in my mind. Then I would end up being really tired and emotional the next day and taking it out on girls (which was so unfair and made me incredibly guilty). However things improved once hannah's op was postponed but I know things will be same again once we have new date. I hope Steve, that you and Mandy have been able to get better sleep now and that the sleep tips worked.
Trace, thanks for info re MP. My mum also had same idea. How did you contact yours and what did you say? We are under Nuffield Orthorpaedic Centre in Oxford, but we live near Bracknell in Berkshire so would assume we contact local one?
I know someone said about having really good support from family and friends which is the same for us, but one thing I have found is that no matter how much they can empathise with you, none of them really understand what it feels like to be going through this. I am so glad to have found this website because everything everyone has said, has been exactly how we have felt, been feeling etc. and it doesn't feel like we are quite so alone.
Baby has not arrived yet, but counting down the days (10 to go)!
Anyway, sorry for my very long winded message.
Take care all,
|thanks for the message ramona , so sorry you have to wait but hopefully it will give you time to settle with the baby. |
my sleep is slightly better thansk for asking .
if you do contact your MP contact the one for the place where you live not where the hospital is . we contacted ours some years ago on a totaly different matter , concerning the inland revenue, and because he was an mp he got action we just never could have so im sure he may be able to help you
|hello steve and mandy and little oliver. ive just put anew post on pc. chloes op posponed. iwont explain again here as it was along letter. how are you all doing? have you had date yet? how is oliver doing? speak to you soon tina x|
|hi trace and family ive put a new post on pc chloes op posponed iwont explain again as it was a very long letter. speak to you soon love from tina x|
keith williams - 2005-02-24 12:04 PM
hello steve and mandy and little oliver. ive just put anew post on pc. chloes op posponed. iwont explain again here as it was along letter. how are you all doing? have you had date yet? how is oliver doing? speak to you soon tina x
so glad you told us we have been talking about her every day and worrying at least now we know she is ok , does the delay agrivate her condition?
oli is great thanks we have not heard anything at all from the hospital i sent an e mail to his surgeon but got no reply
Location: Plymouth, Pennsylvania
|STEVE AND MANDY: |
I HAVE GOT TO TELL YOU, THOSE BLUE EYES OF
OLIVERS ARE POSSITIVELY BEAUTIFUL....
HE IS A BEAUTIFUL BOY....
Location: Greenbush, Minnesota
|Oh my ~ |
I was just going to post that Johanna!
He is a cutie!!
|Hi i'm also in the uk and new to this site Samuel is 18mths old and currenlty under the care of Staffs and birmingham but birmingham is only for plastics at present. |
|steve olivers dad|
|hi and welcome |
sorry ive not been around for a long time
oliver is now 26 months his date is penciled in for 4th october
will get back when when we get it confirmed
|oliver goes in tomorrow for his pre op tests |
we have been told to be prepared for a full day
have been told today that olis opp is going ahead on the 4th october providing that there is still a bed availiable on that date
we are not coping too well mentally
we have a daughter who is very mentally and phyically disabled and as we want to be there for oli we asked social services if they could arange some respite care for her but we were refused because we dont ask for it regualrly
but my little sister has come to our rescue and is looking after her for 2 week while oli is in hospital --she is a brave lady as she has never looked after a disabled kid before !!!!!!!
so we can rest a little now we know we can focus 100% on oli while he needs us and still be happy that heather is being looked after well
Location: Springfield, Mo.
|Please know that we will be praying for your family in Oli's upcomng surgery. Hugs sent your way. |
|tina williams chloes|
|hi steve and mandy, i will be thinking of you and oli on the 4th oct. i pray everything goes well and that oli makes a speedy recovery. be strong for him, i know thats easier said than done. thankgod for your sister looking after your girl now you can put all your energy in getting oli through his op. i have missed our chats but dont come on pc that often now still miss chloe like mad its 5 months next week since shes been gone. anyway you both take care of eachother and take care of your precius little oli. lots of love tina.xxx|
Location: Chittenden County Vermont
|Prayers for everything going well for your family and Olli. He looks like a spitfire, he will kick those docs butts I am sure. |
Take care of yourselves so you can care for him.
tina williams chloes - 2005-09-29 10:52 PM
hi Steve and Mandy, I will be thinking of you and oli on the 4th Oct. I pray everything goes well and that oli makes a speedy recovery. be strong for him, I know that's easier said than done. thank god for your sister looking after your girl now you can put all your energy in getting oli through his op. I have missed our chats but don't come on PC that often now still miss Chloe like mad its 5 months next week since she's been gone. anyway you both take care of each other and take care of your precious little oli. lots of love Tina
thanks so much with all you have been put through it means so much that you took the time to write to us
I must admit to re reading most of chloes threads just before we went away
we felt so close even though we never had the pleasure of meeting her .
you give us strength to keep going with your strength
thanks again it was so good to hear from you again
|hi everyone |
we are back from my sisters
heather is having a ball being treated like a princess
had a very quick journey home 3 1/2 hours instead of the normal 5 hours i think we just wanted to get back home it was so strange travelling with out heather in the van
lisa took everythnig in her stride like she had been caring for her for years .
will get back to you when we have taken oli in want to use this time from now for playing
Davies - 2005-02-11 6:16 AM
I cant believe you are under Brum too. Mr Marks is great he has such a wealth of knowledge and I like his straight talking too!
Have you been to the Children's hospital yet? That where they will do the operation. I guess you see Marks at the Woodlands.
Hi. I'm 14 and I've recently had 3 operations under Mr marks, Mr spilbury and Mr Thompson. Ur right about Marks having a great wealth of knowledge but unfortunately for me he decided not to use it. I have thoracic-kypho scoliosis since birth (disability has run in my family with scoliosis, heart probs, muscular probs and faulty nervous systems).
July 2004: I'm told that I have a 55 degree curvature and that it was dramatically increasing. "More than likely, you're going to need an operation to fix it" Is what I was told. Not too much of a shock 'cause I knew it was coming
21st November 2004: I get a letter confirming my operation on the 28th November. Every year, Marks Spilsbury And Thompson take 6-7 people to London's Cromwell Hospital (private hospital but my op was nhs). I was "lucky" enough that someone fell ill and I took their place.
27th November 2004: Drive all the way to London (from brum) and admitted at cromwell. The hospital was VERY impressive to say the least.
28th November 2004: Spilsbury And Thompson operate on me from my left side. Before they started they told my mum and dad not to interrupt them by phoning the operating theatre. halfway through the estimated surgery time, my parents get a phone call from Marks saying that he wanted to speak to them. My parents finished their prayers and went to see him. He told my parents that Spilsbury and Thompson had placed a clamp on a blood vessel and as an unexpected result my brain stopped sending a signal down my spinal cord. my parents were faced with the choice of either telling them to continue and risk me being paralysed or diffusing my spine and continuing at a later date. my parents chose the latter.
8th December 2004: this time Marks and Spilsbury operate on me from the back. the procedure was a success. the had opened me up and kitted me out with 2 metal rods and 6 screws (worth over 25,000 GPB). These two operations were done at the Cromwell Hospital In knightsbridge, London.
2 days later they moved me back to Royal Orthopaedic (Woodlands). I was there for a while and had to go through the usual recovery stuff like getting up first time and wearing a spinal brace etc. Then I was discharged but with limitations. I wasn't able to do much apart from walk 1-2 hours a day.
5-10th May 2005: I begin to feel a nub of something sticking out my back, near to where the metal rods finish. I went to get an x-ray done and they saw that the lower 3 screws were coming out of my spine. They call me back in for an emergency operation.
16th May 2005: I go for my 3rd operation. this time they made the rods longer and replaced the screws with hooks (now the metal inside me is worth 35,000 GPB). then I had to go to the recovery stuff again.
last year (2005) I couldn't go on a school trip to Drayton Manor theme park but I understood that. this year they still say I cant go because it has to be atleast 18 month from my operation. this got my so mad that I used Photoshop on Marks to vent my anger. below is the original picture of marks followed by my Photoshop edit.
to be honest id say that he's lucky that my version isn't worse. I've had too much homework to do anymore.
sorry for such a long message
|please note: where i said May, i meant to type March, sorry|
|am i the only one to think the picture is in very bad taste |
i realise you are upset , i would be too, but i feel you have gone too far
if there are moderators on here perhaps they could remove the post
|sorry i did not realise i was not signed in the comment above was from me |
|> Am i the only one to think the picture is in very bad taste |
> i realise you are upset , i would be too, but i feel you have gone too far
Normally I would agree with you, sure. But I think Dr. Marks can weather the slings and arrows of a 14 year old patient.
Mr CyanEyed, in the future, how about we try to take the photoshopping down a notch. I'm going to go ahead and remove it just to be safe. You never know, your doctor might be reading here tonight. I'd like to save you an awkward encounter your next meeting. ;-)
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