we saw dr clarke, owen's nuroligist, i told him how conserned i was about his pain, and he agreed he thinks it's coming from his hips and spine, he think's owen needs his surgury by his othopedic mr johnson soon as possible, he also thinks once he's had the operation to remove his ball joints from his hips, then pain wise for medication he may be able to have less medication, he's said how big an operation it is, and that he wouldnt normally say it's a good thing for his age, but he knows owen's quality of life at the momment, and he know's owen's condition and he and myself think it's best if he's just as comfortable as possible.
he also think another mri scan as owen missed his in march due to being ill from an operation, and an eec, and ecg test.
then it was my mum's wedding with her partner, it was a lovely wedding, owen came to the wedding and dinner but he then went to respite befor the night do, so i could let my hair down as i was so stressed out even more then my mum for some reason, and it would have being to much for him going to the night do as he wasn't very happy all day, so it was nice for him to go get a rest at respite, after the wedding my mum and her now husband went on there honeymoon so i had my little sister for a few days, and then she went to her other sister then back to mine just before my mum got back.
it was allot my little sister's birthday on the wedding day, so she turned 5 years old.
then onto the multi agency meeting for owen, normally all owen's health profeshionals attend but most couldn't attend so it was a bit weird having alot less people but we still had a good meeting about what we feels good for owen, i also found out owens physio and occupational therapust have said there happy for owen to lay down as long as hes in the right postition, as befor they wanted him in his specialist chair all the time, they were adament, so its very drastic for them to change there minds, we spoke about owen;s operation for his hips, people mentioned that he wont be able to move them what so ever, which i knew, but they mentioned we need to find out if he'll still be in pain and will he be able to use his specialist equipment and still do his swimming, as i dont want him missing out on the little things he enjoys.
then it was to see owen's peadiatrician which it finally seems we have a plan, after a few months of not sure what to do we have a plan again with everything, owens medication aome of it is stopping and some is changing hoping to help with the pain, owen will have an eeg,ecg and mri as mr clarke had mentioned to me, she doesnt want owen having the operation as its such a big operation and she's going to contact mr clark (nuroligist) and mr johnson (othopedic) and see if it would be worth releasing owens tendons again, he's had this operation befor and it worked for a while but then they went back to being fixed and tightenoing, also she wants owen to have botox in his arms again, and she wants owen to have a blood test which will go away to be tested, a new test thats only come out this year and it looks right down into each chromosone, and can see any change or abnormality, whihc she thinks may help to find a diagnosis, ven though we still think it's mitopchindirial disease, she also though owen had alot of teeth which i do agree with and that he was very skinny, he has lost alot of weight, but he's also had a growth spirt.
this term at school owen's being doing the circus so the last day before half term they all dressed up as clowns, so a few pics below of him dressed up.
were seeing mr johnson (othopedic) nect month and looking forward t finding out about owen's operation