Ok I am sorry I have not updated with Lucys brace news but to be honest I have not been able to get my head around the whole thing and definatly underestimated how it would impact on me,Lucy and the family.
On the day of the brace fitting,we were shown in to a very hot windowless fitting room and presented with what I can only describe as a tourture vest.
Lucy was squeezed in to it and she screamed and screamed,it looked awful and all that was going through my mind was that she will never be able to wear this thing for even a nano second let alone 23 hours a day.
The brace was then trimmed down to fit her but what i was worried about was she didnt seem to be able to sit as it came down so low.
We were sent home and told to just build up her time in it but all I was thinking that there was no way,this would restrict her movement way too much.
We put her in it for 2 hours over night building it up in her sleep time and then for an hour or 2 in the morning but during her wake time she would not move and just lay there with a sad look on her face,I was just an emotional wreck and one side of me was saying take it off and leave her be and the other side of me was saying we need to correct this back before it gets really bad.
After having the brace for a week I took her to see her chiropracter to see what he thought of the brace and how effective he thought it was and also if there was a kinder brace for her out there.
He took one look at Lucy in the brace and said he was not pleased with it at all,he didnt like the way in compressed her tummy and ribs and took a few pictures of her in it to send to a specialist to get a second opinion,I am awaiting his news with baited breath.
After many attempts at trying her in the brace watching her unable to sit,she either lay down or stood and she was so unhappy we decided that there were certain parts of the brace that were restricting her way too much and hurting her so we (trimmed) it down a little,SHHhhhhhhhh!!!!
We had to make sure that we were not compromising the job the brace did but felt there were certain parts of the brace that were to high(Eg ribs) and certain parts too low (eg Legs) and in fact did not affect the way it held her back in place.
The brace took 3 months to make as they lost the first order!!! so maybe by the time we got it it was ill fitting anyway and we know it wont be long before they are refitting her again but I will know what to look out for now and areas of concern.
Lucy is coping a lot better in her brace now and she even managed to bend down to pick up a toy tonight,she is still not able to stand up straight but maybe that will come,she stands with her body leaning forward and bends her knees
I am not sure they will pick up on the fact that we have made a little alteration to the brace as it was very subtle but if they ask me I will tell them,I have to give her a good quality of life at the same time as trying to mend her back,my instincts never fail me when it comes to my children,even more so with Lucy and I feel that maybe now we will cope with it..........I will let you know!!!
I will post some pictures soon,I dont think I was quite ready to face pictures of her suffering so maybe I will be able to post some of a smiling little girl in her new brace.