New Beginnings

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Can you believe it that is has almost been four years since Reid was diagnosed and I am still writing this blog!
Well today I just have good news. Its about time. Last Monday the 21st February Reid and I went off to the Wesley Hospital to have his Frame removed. Originally it was thought that he would need a cast on his leg, however I let the Orthopaedic Surgeon - Dr Pincus make the call and he felt a cast was not needed!! Pretty Scary, but Reid was so excited.
He went off to school on Tuesday the 22nd February for the first time in 4 Years with nothing on his leg. All he wanted to do was "blend in" and thats what he did. As it has been in the past I have found him easily amongst a crowd of little boys all in the same uniform - today was a different story. So now all we have to do is see the Ortho next Tuesday - have some xrays regularly, have a MRI on both legs to check for the cancer, have xrays on his lungs to check them too and pray for no more broken legs.
Reid will continue with Michael at Willows Gym to help him strenghten his leg and whole right side of his body. Lets hope this is the last post for awhile!!

Here we go again!

Last Monday, Reid had his fourth spatial frame fitted. As you could see from the pictures last time Reids' leg was very bendy, so surgery was inevitable. Dr Pincus not only added another frame to his leg he also cut a wedge out of the bone lower than the break to push the bones back into some sort of straight position. You may be able to see it on the pic. I was thinking that Reid would have some terrible pain with this procedure, but he proved me wrong (thank God) and we were out of hospital on wednesday and back to school last Thursday. Three hours after surgery Reid was sitting up in bed watching TV eating Hot chips and asking for Jelly Snakes!! And he had a Morphine PCA, but didnt need to use it..pity he couldnt hand it over to the MUM!
I have now come to realise, even though I have been told on so many occasions, that Reid's leg is not going to be better in months, this is going to take years; and I need to settle in for the ride and not fight it. It sometimes takes awhile for me to get things to sink in.
Today I took Reid to Willows Gym. He starts there tomorrow with his first ever personal training session. I thought we might give it a go. Something different to help Reid gain an overall body strength as well as working on strengthening his leg. He is very excited and cant wait for 5.30pm tomorrow!

Relentless...

Reid is growing as is Alex and time keeps ticking on but Reid's little leg continues to cause grief. Two weeks ago Reid had the bottom frame removed from his spatial frame. All looked great, and even though he had had a general anethetic Reid was back at school the very next day - barely 12 hours since the op!! He was walking and moving without crutches within the week and all looked so very good!
Then he had a fall and lots of tears and more x-rays. The xray didnt show a break but the exterior of Reid's leg was so swollen we knew something just wasnt right. We waited for the swelling to go down and hoped that the large bump would go away. Eventually my Dad stepped in and made me come to my senses and I MMS a picture to Reid's Surgeon who said "..it looks shithouse, come in and see me Tuesday!" Thats today.
Reid had another x-ray and this one definately showed a break. Reid's leg is now so crooked that Dr Pincus has decided to operate again on Monday. This time he will remove a small wedge of bone from his tibia and straigten the leg - thus shortening the bone (i have been told not to worry about this - "we will fix that when he stops growing")Dr Pincus will then put another frame on on the lower part of his leg similar to the last frame - Spatial Frame No.4! Break No. 11. This frame will be on for some time and we need Reid to be completely confident with it. He will need to walk lots and very soon after the op. I will let you know how he goes! x

Operation Spacial frame No 3

Wow, we are home and only 3 days post surgery!! Reid has his new frame on and it looks pretty scary but its got an awsome job to do. Reid didn't handle the last anesthetic too well. He woke up feeling pretty groggy and due to his complete knowledge of operations and their aftermath he was not too happy with this one and started to tell the nurses that he must has been given the wrong anesthetic cos he is supposed to feel a lot better than this...so I was called up to Recovery to calm him down as he was making a lot of noise. day two after the op the physios wanted to get him out of bed and moving. This was a slow process but once he found his new freedom (and the playroom) it was very hard to get him back into bed. This morning he was firing to go so after a shower and all his pins cleaned dr Pincus told us to go home. We may have to have some more corrective surgery in a week or so but all looks good so far. I am in need of a baileys on ice so I am signing off. I will keep you posted. Love Jo xx

Getting ready for Spacial Frame No. 3!

Reid's leg mended very well after the removal of the last frame. He then went into a hard plastic Kaco brace to protect his leg and thank fully this was a brace from his knee down, so Reid was walking/running/climbing trees/riding his bike to school in no time! We had a wonderful summer. We went to Pa's in Sydney for Christmas and all looked bright and rosy.
Check up with Dr Steadman was scheduled at the beginning of March. He was happy with Reids leg and suggested that he now take the brace off on weekends and start walking around without it.
WOW how fantastic - until weekend two of this new found freedom.
Reid was playing outside with Alex and her friend Jessica. He bent down to pick up a ball and he heard his leg snap and I heard an almighty scream. Three screams actually, the girls were screaming just as loudly as Reid was!! When I saw Reid's leg looking quite out of place I ran to him and sat with him as the girls ran across the road to our wonderful neighbourly Doctor Parkin. Thank God he was home.Dr P had Reids leg back into some sort of place and strapped and in his car and we were at St Vincents emergency within 15mins of the break. Now thats service!!
After an x-ray it was confirmed that not only was the tibia broken but so to was the fibula! We called Dr Pincus in Brisbane, and Reid was fitted with cast No.10! A white one - which everyone signed.
Having another broken leg was devastating as we were about to begin the Easter holidays. We had a camping trip planned out at Aunty Lissa's and Uncle Luke's and then two weeks at the Gold Coast! Thankfully the wonderful staff at St. Vincents put him in a waterproof cast!
After the holidays we had another check up with Dr Steadman and he confirmed what David and I were thinking that Reid would have to have some surgery to fix this crooked leg.
Today we met with Dr Pincus and he has decided to reset Reids' leg Thursday next week (3rd June 2010). He will be re breaking Reid's leg in two places and fitting three rings on a Spacial frame. The last two frames Reid has had were only two rings, this one will require three as there will be two breaks. I will keep you all posted. x

Cast Number 10!

Reid and I made the pilgrimage back to Brisbane last Thursday to have the Illarzarov frame removed. This time surgery was to take place at the Holy spirit Hospital in Chermside. Lovely Hospital and very quick. We went in at 11.30am, surgery was at 2pm and we were out of there by 5pm!! Not bad I thought. We stayed with friends for the night. Reid's leg was put into a plaster cast and he and his little friends enjoyed scribbling all over it that night. Kept them entertained whilst I enjoyed a glass or two of Red!
Reid recovers so quickly now from General anesthetics. In a way I feel very lucky that he has very little fear inside operating theatres; but on the other side of that thought how unfair all of this has been to him - I counted that this GA was his 8th. and This Green cast is his 10TH!!!!
The next day we went over to Royal Childrens Hospital and Scott in the Plaster room had the dubious task of removing the plaster cast. This is a procedure that Reid should be used to ...but he hates it. When the cast was removed, Dot from Orthotics moulded his leg for a new leg brace. Yep, he has to go into a new brace and this time it will go right up his leg over the knee. I will post a pic when we get it.
After he was moulded Scott replastered Reid's leg in this pretty Green colour! Reid now resembles Kermit!
The new brace should be ready in two weeks so in the meantime Reid is not allowed to swim or get the leg wet. He has open wounds under the green cast (from the pin sites on the Illarzarov)and we will have to deal with these when it is removed, hopefully all will be fine.
Reid is very well, we are so very lucky.

Transformer No.2

We ducked and weaved the initial diagnosis back in March that Reid needed another Illarzarov frame to help his leg mend from a break he sustained in December 2007. I honestly thought his leg was getting better. He seemed to have no pain and the way he was running around, climbing trees and riding his bike, I thought I had good reason to question the two highly professional Orthopaedic surgeons looking after my son! But even though they did agree with me to begin with, the leg failed to get better so last Monday July 27th, we went back to The Wesley Hospital and had another frame attached. Reid also had to have a small bone graft to help the growth along from his right hip. The Op went very well and the original grafted bone is apparently looking very good. Dr Pincus also removed a rod that was in Reids leg from his original surgery and took out some scar tissue under his growth plate. Reid woke up from surgery very well with plenty of morphine on board. We got out of hospital on Thursday 30th July and have decided to take this week off school as well (more due to the massive influx of the Swine Flu).
We go back to Dr Pincus for a check up next Monday 10th, until then we have to get reid used to wearing a shoe...he hasn't worn a shoe on his right foot since May 2007!