Saturday 22nd November

By Sunday Emma was a different child. She was moving freely on our bed, in fact could get up on her knees. But we noticed that her legs did not seem to be well abducted - maybe the brace had slipped somewhere. So on Monday morning I called the orthopaedic office to see if they wanted to see her earlier then her arranged appointment on Tuesday. We didn't get a call back till late on Monday, so her appointment was left as it was. We had two appointments on Tuesday, the first was with the Surgical Appliance lady, our second appointment was in the afternoon in clinic, where she would also be available.

Itchy rash
Emma had developed a very itchy rash on her back, on Saturday she was crying out because it was very itchy, and for a six-year-old, unbearable. I put a cotton vest on Emma and slithered it under her brace. I wasn't sure if it was a sweat rash, eczema or a reaction to the padding. I had tried aqueous cream, but called a local pharmacy for advice. The pharmacist recommended taking histamine, such a s Piriton (which would make her sleepy too) and to try calamine aqueous cream. This did alleviate the itch a little more, but I had to gently scratch her back to enable her to go to sleep. Emma was not comfortable during the night, and I had to repeat the applications. By Sunday you could see red spots all over her back under the brace. A few came out higher up on her back and under her chin. I called the out of hours doctor's service, Barndoc, to see if someone would come and visit. We didn't want to subject Emma to another car ride and didn't have the wheelchair yet either. They wouldn't come out to see her - only the elderly! But the doctor suggested a cream called Eurax which can come with a mild level of hydro cortisone. This cream did seem to make a difference, she felt less itchy quite soon after the application.

Fitting the brace better
At our first appointment on Tuesday, the surgical appliance lady said the thigh cuffs were too loose and started trimming the padding and plastic to make a better fit. This probably explained why Emma could squirm around. She also felt the abduction had slipped but in the afternoon clinic appointment she'd be available to help make further adjustments. We saw the registrar who could see what I meant about lack of abduction. They decided to take the brace off to adjust it, but Emma was reluctant saying she was 'comfortable'. This made me laugh, the real reason was she had to remove her shorts a knickers. I had bought some large 'shorts' type that could go on the outside of the brace and had no elastic to press on her scar. I said it was OK to take off as I wanted the doc to see her back

The doctor winced when he saw it, it was a very large purplish rash which looked very itchy and uncomfortable. He decided I was probably doing the best for now, introducing the vest, taking Piriton and the Eurax cream - not to try anything stronger. But he admitted it wasn't his area so we mutually agreed a GP visit would be best. As it was outpatients, there was nothing they could give there.

The back of the brace was not covered adequately in the padding, and it had a seam going down the middle which was probably causing the rash too. After half an hour of adjustments they got Emma back in - with one final amend to make it slightly less abducted and causing Emma pain. I was then left to get Emma's shorts on, we could no longer slip the knickers and shorts up over the outside, so with a pair of scissors, tape gauze, I cut the seam and tied the edges together. The bright yellow Airtours shorts had done their job!

Thanks to grandad who held onto Emma while I fetched the car from the top floor of the car park. We've applied for a blue badge, but it will take a while, I'm not convinced we will get one, but I couldn't of got in a normal car parking space and get Emma out into the wheelchair. The car parks are always very busy during the day.

Sore right knee
Emma complained the right thigh cuff was digging into the back of her knee. It was very tender to touch. We decided to move the cuff further up her thigh. Andy eventually found a screwdriver that fitted and we moved it up about 5-6 mm. This helped a great deal. the next day when I was getting Emma up and downstairs for a change, I noticed how her right leg was swollen. Her right calf was more than an inch bigger then her left. I released the strapping a bit and left her for a while, but it was tender to touch on the front. A call the the orthopaedic office got me passed very quickly through to the doctor. I was to get Emma to lay down and raise her foot above her heart level. The pressure on the back of her knee had caused a 'backlog' and should go in an hour or so. It did! We then took our first jaunt out to the school to pick up big sister and see a few friends. This really lifted Emma's spirit.

Emma up and walking
It's Sunday today, the registrar had told me another week of non-weight bearing as they had abducted her legs further. But we decided today, she was in good spirits and no pain. The rash had abated (despite a VERY unhelpful visit to our GP clinic. The doctor we saw just said 'what do you want me to do about it?' - we did come away with some barrier cream Epiderm, but I think the Eurax cream and Piriton had helped the most), to let Emma stand and see if she could walk.

Emma was very wobbly at first, unsure of how to move. I had to demonstrate how to move her legs, but that was it, she was off...