Wednesday, 13 June 2012

A UTI, blended diet and Nutrition

The last few days Faith has been waking earlier than she has been and waking sweating which hasn't made sense as the previous week everything was so much less. So this morning I thought it was time to test that Faith wasn't in a state of ketosis which has happened before and since we have removed her overnight feeds I wanted to check. Good news, no ketosis at this stage, but bad news high leucocytes and nitrites in Faith's wee, all signs that she has a UTI present. This would explain her sweating, waking earlier and some irritability. I am so surprised, I didn't expect this, she is so well during the day and she doesn't have a temperature and usually she does. 3 months UTI free and now she has one again. :( We will send a urine sample off to the laboratory this morning but will have to start her on Nitrofurtoin as the lab takes 2-3 days and she could get so sick in those days. I am sad and disappointed but at least we can treat it swiftly.

Urine sample has been sent off, my mind is racing, wrote the above yesterday and I didn't get to come back as it was so busy and intense at times. My brain is constructing letters in relation to finding and applying for finding for a standing frame and following up an appeal with the NSW government over other equipment so hence why my brain is on overload. So many things to think of. Faith had a lot vomiting in the morning but in the afternoon we thankfully didn't have any. We have found that she isn't as sick this time from the UTI, we believe that the blended diet is helping keep her tummy somewhat more settled than usual. Mornings seem to be the worst as overnight we have given her panadol and nurfen. Faith is doing pretty well, she is still playing but gets tired and restless more easily, I think we caught it early. 

My days are pretty full at the moment, I am reading and reading all about nutrition and diet so that I construct the best possible blended diet for Faith. I very excitedly received the Homemade Blended Formula book in the post yesterday and hope to do some reading today. I have nearly finished reading Complete Tubefeeding and I wanted to share a really good excerpt.

Social perception biases
'As blended diet has come a 'thing' these recent years, defined as something novel and other than the simple common sense of feeding people food, a certain fuzzy picture of a'BD-er' has begun to emerge. There is a stereotype, and as such it is far from accurate but at the moment does contain some grains of truth. BD-ers are likely to be more educated than average, especially being self-taught in all sorts of medical stuff fields. Many are parents of special needs children or carers of older people who have close personal motivations for wanting to 'get it right'. Many currently choosing BD have only 'found' it after long struggles with formula tolerance and problems and feel aggrieved that no-one told them about it sooner; this can make for some zealous words indeed. BD-ers are more likely to be the sort of person to feel empowered to disagree with their doctor's advice if it doesn't make sense to them and as such can get labelled 'difficult' or 'feisty' or something similar'.
Complete Tubefeeding by Eric Aadhaar O'Gorman

I really liked the description of a 'BD-er' as to me 'getting it right' is so important. I want what is best for my daughter and if it means speaking assertively then that is what I'll do. So many times with our trips to hospital and even clinics I feel like I am seen as the difficult mum just because I want better than best and want to know more so my husband and I can make the best decision for Faith not just asking on what we are necessarily told. I like having the full picture and all the options. It is all about being assertive and I didn't know about the blended diet until someone on a forum mentioned it and it went from there. We are still are long way off from being completely on a blended diet but we are doing it at the pace that suits Faith and even small changes to her diet we are already seeing results.
  • less sweating 
  • less vomiting 
  • clearer skin 
  • happier
  • More energy
I look forward to the future and seeing what other dietary changes will make to Faith's life.

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