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Any UK families?
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Ross Family
Posted 2005-02-11 4:13 AM (#7010 - in reply to #6903)
Subject: RE: Question for the Philly Shriners people...


Hi Johanna, Thanks for your message. Not sure if you will have seen on UK board but Hannah's op has now been cancelled for Feb and it to be rescheduled for a few months time. Very frustrating and upsetting but it has been reassuring to hear that other children like Zoe have gone through procedure and have come out the other side being able to do the same as they did before.

Take care
Ramona
UK
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Sally
Posted 2005-02-11 4:23 AM (#7011 - in reply to #6922)
Subject: Re: Any UK families?


Hello Trace and Family,
I've just discovered this web site. Our 19 month son Freddie is under Mr Marks at Birmingham. We saw him this week for the results of Freddie's scans and discovered that as well as his hemivertebra at T10 (which we knew about) he also has some abnormalities with his ribs which will require the VEPTR. His first op to remove the growth plate on his hemi will be this spring and then in a year or so MR Marks will fit the VEPTR. This is the first time I've been in touch with anyone who has been through similar. Freddie is a busy mad normal little boy and it's good to hear that Reuben is back to normal after his op. I really don't want to wrap Freddie up in cotton wool so it's encouraging to hear your story.
We live in Shropshire so not quite such a treck as you to the hospital. They're brilliant there aren't they?

Take care
Sally
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davies
Posted 2005-02-11 6:10 AM (#7012 - in reply to #5539)
Subject: Re: Any UK families? For Ramona.


2525
Location: Wales (UK)
I am so sorry that the surgery has been cancelled, but maybe it is a blessing thatt you can have your lovely little baby without the hastle of being in hospital for the VEPTR.

I know the frustration that you are feeling, it sometimes feels like it is constant battle in what is alredy a really hard and emotional time.

Which Hospital are you under?

My home email is Ashmoor123@aol.com and my home phone is 01597 822930 if you need a natter, anytime.

Trace x
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davies
Posted 2005-02-11 6:16 AM (#7013 - in reply to #5539)
Subject: Re: Any UK families? For Sally


2525
Location: Wales (UK)

Wow weeeee another little fella who has hemivertabrae!!! So far there have been very few people who have heard of such a thing!!

Reuben has two in the thoracic area, I am not sure what number they are though. I have asked Brum for a copy of his x-rays.

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 th operation. I guess you see Marks at the Woodlands.

Where are you in Shropshire? We live in llandrindod Wells (26 miles south of Newtown).

I check my home email more often, so if you want you can email me on Ashmoor123@aol.com or if you fancy a natter 01597 822930.

Before Reub went in for his op, I phoned a lady in Brum whos Son has had the VEPTR. I found it such a help as I had so may questions and worries and fear of the unknown, but she really helped me sort myself out and of course helped prepare me for what to take to hospital etc.

It is really nice to know that there are so many British Children emerging.

I do not wrap Reuben up in cotton wool, he wouldn't let me being a typical 2 yr old chappy!!!!!

Take care

Trace x

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Josiah's Mom
Posted 2005-02-11 8:31 AM (#7019 - in reply to #6903)
Subject: Re: Question for the Philly Shriners people...


Regular

Posts: 73
2525
Location: Harrisonburg, VA Shenandoah Valley
Dear Ramona,
Welcome to the board. Our experience with Josiah was that we originally thought when he hit the magic 6months of age that he would automatically have the surgery which would have been Jan 2003 we then had dates for every month starting in May2003, He finally had his surgery in October 2003 in San Antonio, TX. He has had 1 replacement of his rib and 3 expansions. since then. He is 2 1/2. Before the surgery they told us Josiah would never crawl or walk. He now does the butt scoot, boogey. and in May he is going to have surgery on his right leg, casted and then put in a locking leg brace and try to get him on crutches or a walker. The surgery has given him a bright future. Now I am rambling but I have only positive things to say about VEPTR. Josiah would not be here today with out it due to the respiratory insufficency syndrome everything else is a big plus.
Hope this helps.
Lisa
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Zoes Nana
Posted 2005-02-11 9:19 AM (#7021 - in reply to #6903)
Subject: Re: Question for the Philly Shriners people...



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
DEAR RAMONA:
I AM SORRY THAT YOU HAVE BEEN PUT ON HOLD, THIS MUST BE VERY
FRUSTRATING...PLEASE KEEP COMING TO THE BOARD, I KNOW IT WILL BE
A STRONG TO YOU....
GOD BLESS....
JOHANNA
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Hannah's Mom
Posted 2005-02-12 1:26 AM (#7056 - in reply to #5539)
Subject: Re: Any UK families?



Expert

Posts: 2039
200025
Location: Springfield, Mo.
Ramona,
So sorry to hear that Hannah's surgery was cancelled. We will be praying that she will be rescheduled soon. Hang in there I know it is so discouraging to know that your child has to wait but we will pray that they get her in real soon.
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Zoes Nana
Posted 2005-02-14 7:17 AM (#7099 - in reply to #7010)
Subject: RE: Question for the Philly Shriners people...



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
TRACE.
I THINK THESE ARE THE POST YOU GUYS ARE LOOKING FOR.....

GOD BLESS,
JOHANNA
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candyman
Posted 2005-02-15 6:24 AM (#7131 - in reply to #5539)
Subject: Re: Any UK families?



Regular

Posts: 82
252525
so sorry to here that you have been put on hold

i am sure that the children do not suffer in these short waits but the parents sure do .
we are very lucky that oli has been on the waiting list for only a week and our first op date is projected for april .
i am having such problems sleeping right now and after seeing my gp today she puts it down to the worry about oli's opp and i guess she is right

it is so reasuring to read all the good stories here . one thing that surprised me was where people are saying that the op is done through te back .i dont know why but i thought that it would be done through his chest does anyone know if this is ever done . neither myself or mandy can remmbemr what Mr Freeman said and we are not sure if he said it or we just assumed it .

thanks again to everyone for their kindness is sharing theor stories here.


steve
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davies
Posted 2005-02-15 6:50 AM (#7132 - in reply to #5539)
Subject: Re: Any UK families?


2525
Location: Wales (UK)
Hi steve and Mandy

Did you get my HUGE email the other night?

It is hardly suprising that you are struggling to sleep. I went to my Drs and they gave me diazapam before the operation as I was just so knackered with the worry and organisation of it all!

I have never heard of the surgery being done through the chest, I am sure herre in the UK they will be far less adventurous anyway as this whole VEPTR thing is so new, they will stick to the basics.

Is Dr Freeman based in Nottingham?

Has he had his MRI and CT scans done yet?

Take care and whilst seeing your Dr try and find out if you have paediatric nursing teams who will visit your home after the operation. We have a nurse called Kevin who is fab. He checks Reubens wound etc without having the trauma of Reuben going back to the hospital too many times. More than that though is the fact that it is nice to have support.

Has Oli got a Health Visitor? They too should be supporting you through this.

Of course, we will support you all in any which way that we can.

Take care all of you

Trace
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josiejean
Posted 2005-02-15 6:53 AM (#7133 - in reply to #5539)
Subject: Re: Any UK families?



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
i too have never heard of them doing the surgery through the chest.

shawn
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davies
Posted 2005-02-15 6:58 AM (#7134 - in reply to #5539)
Subject: Re: Any UK families For Tina and Keith


2525
Location: Wales (UK)
As soon as you get an email address let me know so that we can keep in touch.

How is Chloe doing? It cheers me to read that she is a strong little girl. I think this stands them in good stead for the operation and of course the recovery after it. Although Chloe is a unique young lady, I am sure she will astound you, and surely does everyday.

Are they thinking to bring the Prof over for Chloe as she is such a unique and special little lady? If he doesn't come over I am sure he will advise the medics.

Reuben's CT and MRI scans went to Prof Campbell and he instructed Birmingham what and how to do the VEPTR. I guess every child is an individual and we took huge comfort form the fact that The Prof had advised them on our little champ.

Take care and if you need anything give me a phone 01597 822930 or email me at home on Ashmoor123@aol.com, or post on here.

take care

trace
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candyman
Posted 2005-02-15 6:59 AM (#7135 - in reply to #5539)
Subject: Re: Any UK families?



Regular

Posts: 82
252525
thanks trace but sadly no i did not get your e mail

my addy is candyman@ntlworld.com

if by chance you still have it would you please re send it would help so much
the facts you raised
yes mr freeman is based at the QMC in nottingham
oli does have a health visitor but she does not even know about his condition perhaps we should take him to see her .
we also know nothing about any follow up nrsing .
he has not had his mri or ct scan yet but we were told at last weeks appointment they would let us know when there was an apointment for him so we are just waiting .
the doctor gave me some sleep routine tips to try as we both would rather stay off the tablets for as long as possible
thanks for your prompt reply and for the help you are giving us in this vey very dificult time
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davies
Posted 2005-02-15 7:00 AM (#7136 - in reply to #5539)
Subject: Re: Any UK families For Ramona


2525
Location: Wales (UK)
How are you all doing after news that the surgery is being put on hold. It must be very hard for you, and very frustrating. We had to fight for Reuben to have his scans. We got our local MP involved and the waiting time moved from 6 months to 3 weeks!!!! I know the cases are different, but if you have a local MP he may be able to help you.

When is your baby due? Are you feeling okay?

Take care, as with you all you know my number and my email if you need anything or just fancy a natter or rant!!!!!

Trace
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candyman
Posted 2005-02-15 7:36 AM (#7138 - in reply to #5539)
Subject: Re: Any UK families?



Regular

Posts: 82
252525
thanks for that advise trace
i have just phoned oli's health visitor and made an apointment for her to come out and see us-but it is 2 weeks before she can come but at least she will be getting involved.
steve
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tina williams
Posted 2005-02-15 10:30 AM (#7150 - in reply to #7131)
Subject: Re: Any UK families?


hi steve and mandy like you i am having sleepless nights worrying about chloe's op even though we dont have a date yet. only this morning i was sat crying for nearly 2 hours whilst talking about chloe's op to her nurse. (we have a nurse come in because chloe's syndrome is life limmiting). We have been told that they will go through her chest, iam a bit confused because the procedure is done from the back thats my understanding anyway.
tina
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tina williams
Posted 2005-02-15 10:46 AM (#7152 - in reply to #7134)
Subject: Re: Any UK families For Tina and Keith


hi trace , chloe's doing fine at the moment we still hav'nt got a date yet.yes they are hoping to bring prof over because of her complex needs also chloe is on warfarin to thin her blood because of her mechanical valve and her heart is'nt as strong as they would like it to be. she has to come of her warfarin when she has op but they have to be careful she does'nt get a blood clot. we have been told she only has a 40% chance of making it through the op i have done nothing but cry this morning i get like that now and again people say i am a strong person but i feel like im falling apart, i also have a 23yr old son with learning difficulties who has diabetis so he is hard work as well. it is so good to be able to turn pc on and talk to someone thankyou. from tina
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candyman
Posted 2005-02-15 10:49 AM (#7153 - in reply to #7150)
Subject: Re: Any UK families?



Regular

Posts: 82
252525
tina williams - 2005-02-15 3:30 PM

hi steve and mandy like you i am having sleepless nights worrying about chloe's op even though we dont have a date yet. only this morning i was sat crying for nearly 2 hours whilst talking about chloe's op to her nurse. (we have a nurse come in because chloe's syndrome is life limmiting). We have been told that they will go through her chest, iam a bit confused because the procedure is done from the back thats my understanding anyway.
tina



tina i just want to give you a big hug
it is just how i am i know fella arnt supposed to cry but hey who cares
we have had no support apart from friends and the good people on here and it is so hard . just going to the doctors today i was quite upset just talking to her about oli's opperation .
i too thought they were going through his chest but we will ask next time we see Mr Freeman --even though at the moment we do not have any more appointments

just hoping that they can sort you a date out very soon if it helps we are thinking about chloe but you too

love steve + mandy
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tina williams
Posted 2005-02-15 11:29 AM (#7158 - in reply to #7152)
Subject: Re: Any UK families For Tina and Keith


trace i forgot to give email address this is keith's cant seem to get on mine for some reason told you wasnt much good with computers. willz666@msn.com ( I THINK THATS RIGHT) Tina.
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candyman
Posted 2005-02-15 2:17 PM (#7164 - in reply to #7132)
Subject: Re: Any UK families?



Regular

Posts: 82
252525
davies - 2005-02-15 11:50 AM

Hi steve and Mandy

Did you get my HUGE email the other night?

It is hardly suprising that you are struggling to sleep. I went to my Drs and they gave me diazapam before the operation as I was just so knackered with the worry and organisation of it all!

I have never heard of the surgery being done through the chest, I am sure herre in the UK they will be far less adventurous anyway as this whole VEPTR thing is so new, they will stick to the basics.

Is Dr Freeman based in Nottingham?

Has he had his MRI and CT scans done yet?

Take care and whilst seeing your Dr try and find out if you have paediatric nursing teams who will visit your home after the operation. We have a nurse called Kevin who is fab. He checks Reubens wound etc without having the trauma of Reuben going back to the hospital too many times. More than that though is the fact that it is nice to have support.

Has Oli got a Health Visitor? They too should be supporting you through this.

Of course, we will support you all in any which way that we can.

Take care all of you

Trace :handshake:


just a thought
i have a very selective filter so please if you can send it again make the subject line veptr i get so much spam i have lots of key words deleted from the server so that may well have happened

steve
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keith williams
Posted 2005-02-16 8:04 AM (#7196 - in reply to #7153)
Subject: Re: Any UK families?


Member

Posts: 22

hi steve and mandy just had chloe's date for op. it is 21st feb yes next monday bit of a shock at moment. just trying to speak to her brothers and sisters at moment catch up later. from tina
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candyman
Posted 2005-02-16 8:17 AM (#7197 - in reply to #7196)
Subject: Re: Any UK families?



Regular

Posts: 82
252525
keith williams - 2005-02-16 1:04 PM

hi steve and mandy just had chloe's date for op. it is 21st feb yes next monday bit of a shock at moment. just trying to speak to her brothers and sisters at moment catch up later. from tina



so glad to here that news it is great
hoping everything goes really we ll for you

steve
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keith williams
Posted 2005-02-16 10:52 AM (#7210 - in reply to #7152)
Subject: Re: Any UK families For Tina and Keith


Member

Posts: 22

hello trace got appointment through this morning. chloe has to go in on monday to come off her warfarin and her op will prob be done thursday the 24 feb. i am so scared all ihave done is cry and wonder if iam doing the right thing by her. like i said before they gave chloe only a 40% chance of pulling through. we were hoping to take her to meet the tweenies with make a wish fondation but her appointment has come so soon. so i hope you will pray for our little princess she needs all the help she can get. from tina if anyone else reads this will you please pray for her too.
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candyman
Posted 2005-02-16 11:17 AM (#7212 - in reply to #7210)
Subject: Re: Any UK families For Tina and Keith



Regular

Posts: 82
252525
sure will keith
we were so excited when we heard it had come through so soon , i said to mandy isnt it funny we were happy for something to happen to someone we did not even know about a few days ago but i think it shows just how much we are all there for each other .
even though they say chloe has a 40% chance of coming through they are bound to tell you on the low side to cover them selves and what is her chance without the opperation ?they would not even concider doing it if was not the right thing
you have shown by your postings that you are both devoted to her and are doing your very best for her
please contact make a wish to see if there is anything they can do before her opp you never know they may be able to do something ever if it is something different
are all in our thoughts
steve

Edited by candyman 2005-02-16 11:19 AM
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keith williams
Posted 2005-02-17 8:06 PM (#7296 - in reply to #5539)
Subject: Re: Any UK families?


Member

Posts: 22

hi eveyone, as i said chloe has to go into hospital on monday 21st feb, she has to be taken off her warfarin and put on hepron iv. her surgery will take place on friday25th and prof cambell wont be there he could'nt make the day that our own dr booked the theatre. they have booked it for the whole day so as you can imagine we are very worried and upset that he couldnt make it, prof being the top dr gave her a better chance that was our own dr thoughts as well. we have told chloe what is happening to a certain extent she does'nt really understand she thinks that it is prob just another one of her routine stays that has become part of her life. we have had lots of support from family and friends and also different agencies(chloe's different care workers) and of course lots of veptr families but it is still hard and upseting but like everyone keeps saying she pulled through open heart surgery at only 8months old then they gave us a 50% chance and with her syndrome they didnt expect her to pass a year old and now she is 4 going on 24. im rambling now arent i so i will get off now and try to keep you all informed . bye avery tired and emotional chloe's mummy x
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