December 2008
Emma continued to wear the brace till 23rd December. It took 3 weeks before she was willing to take it off for a short while so she could have a bath. She said she felt very strange - like she was floating. We continued to have difficulties with the brace, the screws came loose a few times and Emma was able to bring her legs together.
In the mornings I would find Emma had her legs almost touching, so we took to placing cushions and pillows between her legs at night time. Her legs seemed to be less abducted, we spent time trying to adjust the brace but the more you abducted the cuffs the more the side joint pressed into her thighs. I reported this to the doctors but they were unable to see her till the following week. Unfortunately Emma was very poorly for the next week and when she was better, this only left one week before the brace was to be removed. Emma had bruising on her thighs and pressure marks, pinches from the straps. She also had itchy patches under the cuffs which drove her mad!
Towards the end of this time in the brace we noticed how wonky her hips were. Her left hip was higher then the right and not very prominent - it seemed to be twisted toward the back. By now she had lost weight and the brace had moulded her little frame. the brace became loose around her body and I had to add extra pads around the waist. Her hip bones were also very sore from the rubbing and pressure of the brace. She could move herself within the brace. We were beginning to feel the brace was a waste of time and was not doing its job.
Back to school
This was more difficult the we anticipated! I called to suggest Emma came back a few mornings per week before coming back full time. But it was not as easy as that! The head was greatly concerned to health and safety. Did Emma need a carer? Well no, she could walk and go to the toilet herself. But we had to wait for a few days before they finally agreed she could come back, but no one would push the wheelchair if they didn't want to. Big thank you to the Perthes Association who were able to loan us a self-propelling wheelchair - that solved that problem! Of course nobody really minded, schools are so afraid of being sued, but a few words with one of the governors made things move along. The last few weeks at school were few. The following week was the Christmas play, so Emma missed one day and went to watch the play on another day. Then there was PE in the playground - could I not bring Emma in during this time! Finally had one day, then the poor love was very poorly and missed another week!
Brace removal
Was very disappointed at our appointment - no consultant again. So we haven't seen him since the operation. Emma went for x-ray. No difference apart from a little more flattening. We were expecting her to continue wearing the brace at night time, but no. The nurse and me then spent the next hour and half trying to remove the dressing. Lots of magic water, gently easing, lots of tears. But the wound looked fine. Next appointment in 2 months, but this was later revised to 7 weeks.
Physio appointments
Our first Physio outpatient appointment was in December with the brace. She measured her movement in and out of the brace. Poor in all directions. At our next appointment sans brace she was able to take more measurements and give strengthening exercises. Her abduction was still very limited, Emma had a trendenberg gait. We continued with the exercises at home and Emma did very well on the strength based ones.
21st Jan Physio appointment
Emma's abduction is very poor. We've been waiting to see the benefit of the tenotomy, but none yet is apparent. Her hips are still very lopsided, and taking this into account her abduction is 5 degrees - really, really poor. Our next hospital appointment is on 10th February.
SNOW
Snow arrived on 2nd February, several inches - wow! what fun we all had. Let Emma have some fun, lots of layers but spent the evening and next day in pain.
No comments:
Post a Comment