16th june 2011

It has been a week since we have started intermittent catheterizing and it seems to be working well, Lexi has been getting along with it and takes it in her stride.  She is also on medication daily but it is good to know that we are getting somewhere and that things are being done.

I have swapped the children's rooms around as Lexi needed a bit more room and so I'm currently looking for great ideas for their rooms, Logan doesn't mind so much being in a smaller room i think he is quite looking forward to having a mid sleeper bed.

We have a lot more scans and investigations with regard to the bladder problems and we are hoping that most things are solved by what we are doing including minimising the number of infections she gets.

The new things that she needed such as her 5th pushchair and another car seat seem to be working out fine, next is a toddler bed!

People obviously ask me how I'm managing, and the truth is its hard, but I'm trying to remain positive and even though she will have to learn to catheterise herself when she gets older i just keep thinking that its not the worse that could happen.

It has made things a lot harder with regards to care as you have to be properly trained to do it and so things like nursery and her starting school seem very daunting, and only myself and my husband are trained at the moment so going out takes a lot of planning.

She has her DMSA scan again soon to see if her kidneys are damaged. One step at a time and we will get over each hill.

21st March 2011

On Friday Lexi was supposed to have a urodynamic done at her hospital, i was very nervous about the invasive procedure but was hoping it was going to give us some more answers, that is the main problem with our situation is that we are always stuck in limbo with one thing or another, always waiting further investigations and of course doctors cannot say what will happen in the future.

They say that the lipoma is extensive and so is over 50% likely to have walking problems but that we are just to keep an eye on it! so apart from the torturing experience of watching the likely hood of our daughter starting to loose her abilities we have the other ongoing problems that arise on a day to day basis, namely her urine infections, is it a sign that things are already starting to degrade? that is what Friday was supposed to enlighten us about.

We were all ready to begin the procedure when in the true style they found something else wrong and were unable to go ahead, Lexi had fused labia which make it impossible for catheters to be inserted, an estrogen cream has to be applied but most probably she will have to have an operation, if so both this and the urodynamics will be carries out under a general.

Is this the thing that can also account for her urine infections we will have to wait at least another month to find out. In the meantime we are now looking to get her a new car seat that is especially made for her, as we have found out things like that do not come cheap so help us in anyway you can by clicking on the links around to help monetise her account.

16th March 2011

As this is the first blog ive ever done you will have to bear with me.  We are again looking for another pushchair for lexi (no5) and car seat, nothing seems to fit everything we need and finding a company to make one from scratch as you can imagine would be extortionate.  She has been un well all today and yesterday, high temp and sick, last night i saw every hour.  We are hoping that she will be better for Friday as she has a very important procedure, which will tell us more about her bladder and bowls, we are both a little nervous, i admit that somethimes we dont want to think about certain things, ignorance is bliss and all that but it hits you like a car when you have to come to terms with something.
Never the less lexi is the meaning of inspiration for our family and those that know her. Lets hope we all get some sleep tonight.