my son michael has unilateral pffd and has had lengthening with Dr Paley his leg has been lengthened 20cms but we still have a long way to go michael is almost 10
ginette mckenzie
he had a lengthening in 2003 and got 7 cm another in 2005 and got 8cms and we just got 5cms
i think we would need another 2 with Paley but we are lengthening back home in the UK now and the surgeon here will only do a maximum of 5cms a time so we may need 3
he also needs hip and knee surgeries so we still have a long way to go mckenzie794@hotmail.com
ginette mckenzie
hi there michael had 3 lengthenings the first one in 2003 got us 7cms and then the next in 2005 we got 8cms we just got 5cms and still have the fixator on
if we were still with Dror we proberley wouldve got a little more length and I would say only need 2 more lengthenings. However we are now having the surgeries in the UK and the surgeon will only do a max of 5cms so we may need 3 more lengthenings
Just incase any UK families are reading this and would be interested our surgeon here is Mr Monsell at Bristol childrens and he is fantastic,
I was also wondering if Dr. Paley has spoken to you yet about stopping growth on the opposite thigh bone to allow you to catch up?? We did this proceedure with McKenna last year, and so far so good. Please let us know when ever you get a chance, and we hope all is well with Michael and your family!!!
ginette mckenzie
hey i love you guys
how is it going ?
yeh we talked about doing this and we will definatley be going ahead with it but he didnt specify an age
im not sure if it will be Dror or the UK surgeon who has taken michael on
we plan to have more surgeries here and then back to Dror for others especially the hip and knee
how are you guys and Dylan ? how old is he now so much love to you keep in touch
ginette mckenzie
hi
i tried to reply to you yesterday
did you get it only
dave bailey didnt get the reply i sent him
just trying to find out if im doin this right
ginette mckenzie
hi i tried to reply to you yesterday but i dont think it worked, mckenna must be 11 now, where did that time go ? how old is Dylan, iam so glad to hear from you guys. we are going to stop the growth in the left leg but i am not sure when, michael is 10 in a couple of weeks so it cant be that far away
A UK surgeon has now taken over with the lengthenings - just because it was so rough financially for us to get over there, but we still have to come back for the knee and hip, i dont know if the surgery to stop the growth will be done here or by Dror but I would really like to hear about it, how long was the surgery and recovery period - do you go into a cast or frame? did they do it at the same time as a lengthening or was it a seperate surgery my email is mckenzie794@hotmail.com lots of love i will never forget how supportive you guys were to me when michael was first born - i was just a little bit of a wreck wasnt I
Hi Mum,
Nice to see you getting a post on here, the UK pffd posse in full effect!! Hope you, Michael and the kids are well. Be chatting with you & Sal on facebook as ever again soon.
Love Wurzel McDave xx
(If anybody else reading this is wondering, we already know each other, and yes i am quite bonkers!)
hi ya son
yeh Dave stalks me all over the net, but he is very sexy so its fine
good 2 c u on here, we must talk on facebook - lets say 24/7 !
great that u r on here to support parents, dave can tell u the price of gas in every state, fascinating mind of info - my boy!
Comments
surgery
How many lengthening surgeries has he had so far to get to 20 cm? How many more surgeries does Paley think he'll need?
Beth
bethreinert@yahoo.com
surgery
ginette mckenzie
he had a lengthening in 2003 and got 7 cm another in 2005 and got 8cms and we just got 5cms
i think we would need another 2 with Paley but we are lengthening back home in the UK now and the surgeon here will only do a maximum of 5cms a time so we may need 3
he also needs hip and knee surgeries so we still have a long way to go
mckenzie794@hotmail.com
LENGTHENINGS
ginette mckenzie
hi there michael had 3 lengthenings the first one in 2003 got us 7cms and then the next in 2005 we got 8cms we just got 5cms and still have the fixator on
if we were still with Dror we proberley wouldve got a little more length and I would say only need 2 more lengthenings. However we are now having the surgeries in the UK and the surgeon will only do a max of 5cms so we may need 3 more lengthenings
Just incase any UK families are reading this and would be interested our surgeon here is Mr Monsell at Bristol childrens and he is fantastic,
surgery
I was also wondering if Dr. Paley has spoken to you yet about stopping growth on the opposite thigh bone to allow you to catch up?? We did this proceedure with McKenna last year, and so far so good. Please let us know when ever you get a chance, and we hope all is well with Michael and your family!!!
Sincerely,
Chuck, Karla, Dylan & McKenna
ginette mckenzie hey i love
ginette mckenzie
hey i love you guys
how is it going ?
yeh we talked about doing this and we will definatley be going ahead with it but he didnt specify an age
im not sure if it will be Dror or the UK surgeon who has taken michael on
we plan to have more surgeries here and then back to Dror for others especially the hip and knee
how are you guys and Dylan ? how old is he now so much love to you keep in touch
pffd
ginette mckenzie
hi
i tried to reply to you yesterday
did you get it only
dave bailey didnt get the reply i sent him
just trying to find out if im doin this right
surgery
ginette mckenzie
hi i tried to reply to you yesterday but i dont think it worked, mckenna must be 11 now, where did that time go ? how old is Dylan, iam so glad to hear from you guys. we are going to stop the growth in the left leg but i am not sure when, michael is 10 in a couple of weeks so it cant be that far away
A UK surgeon has now taken over with the lengthenings - just because it was so rough financially for us to get over there, but we still have to come back for the knee and hip, i dont know if the surgery to stop the growth will be done here or by Dror but I would really like to hear about it, how long was the surgery and recovery period - do you go into a cast or frame? did they do it at the same time as a lengthening or was it a seperate surgery my email is mckenzie794@hotmail.com lots of love i will never forget how supportive you guys were to me when michael was first born - i was just a little bit of a wreck wasnt I
Michael
Hi Mum,
Nice to see you getting a post on here, the UK pffd posse in full effect!! Hope you, Michael and the kids are well. Be chatting with you & Sal on facebook as ever again soon.
Love Wurzel McDave xx
(If anybody else reading this is wondering, we already know each other, and yes i am quite bonkers!)
ginette mckenzie hello my
ginette mckenzie
hello my love
yes dave stalks me on the web
he is bonkers but very sexy - catch u on face book lets say 24/7
ttfn
pffd
hi ya son
yeh Dave stalks me all over the net, but he is very sexy so its fine
good 2 c u on here, we must talk on facebook - lets say 24/7 !
great that u r on here to support parents, dave can tell u the price of gas in every state, fascinating mind of info - my boy!