Wednesday, 27 February 2008

Grace going on IV's tomorrow. She hasn't particularly been unwell, its now just routine every 3 months regardless of how she is.

Monday night she awoke at 3.00am with terrible tummy pain and then was sick a few times, very little amounts, but quite clearly the pain was causing her to be sick. The following morning I gave her two big doses of lactulose (although she does have it every day) I have been told that I can give her 30ml in a day if she is struggling.

It seems to have worked and I don't know if we need to do gastrografin just yet, but I think we will have to do it in a week or so. Her tummy was huge during the day on Monday so I sort of expected it. Poor thing has so much to contend with all of the time and the only thing she was concerned about was missing her school trip to the Space Centre today. She has gone on the trip so I hope she is OK, but I don't think wild horses could have kept her away.

So IV's tomorrow, and she has done overnight sats tests twice this week. The first one wouldn't down load correctly and kept saying her sats were below 80 so we had to do it again Sunday night. The damn thing alarmed all night and the nurse said it must be because they are going below 80. I thought not, they were quite low when I checked, hovering between 89 and 93 and on occasions pushing up to 96,but every time the alarm had gone off and I went to check, they were over 90, but she had been woken up every time by the beeping.

We haven't been told what happened with this reading, but as we are seeing the nurse in the morning for port access I expect she will tell us then.

Generally though Grace has been having a better few weeks, even coping better at school, although she is snacking through the roof! and it shows, she has outgrown every thing she has, her tummy is better today but it has been bloated and her face looks like a little hamster (or a big hamster) but she seems ok, if anything a little more teary than normal, but coping with stuff.

I have been to the gym this morning for the first time this week due to lack of sleep for a couple of nights with the sats monitor and Grace being poorly (why do children always get unwell during the early hours?) so it has taken me until now to pull myself together. We also have had a bit of a family crisis, of which I can't discuss and am sworn to secrecy,because its not my secret, but that has been very upsetting too (the crisis, not trying to keep a secret... oh well that's true too)

I am syking myself up for a road run on Friday or Saturday morning because there is just absolutely no chance I can get to the gym again before next Tuesday and I can't swim either presently. We got all exited and about going swimming on Sunday with a friend and then remembered its IV time :( So a road run seems very likely.

Monday, 18 February 2008

Quick blog

Just a quick blog to say that we are still around.

Its the first day back at school after half term and we have been so busy that I haven't had time to blog.

During the week we have been bike riding, we have been to the cinema, swimming and to a ball area.

Grace decided to buy herself a bike so we have been practising as often as possible and hopefully she will be able to ride in a few more days, without stablisers. With this in mind we have been taking advantage of the nice weather and getting outside as much as possible, we have even been able to clean down the trampoline and use it.

This came about because we felt that Grace doesn't get the exercise that we think that she needs during the winter months and maybe it will help boost her lung function and her general well being, and also because since her bronchoscopy, although her steroid intake has remained the same, she seems to have suddenly regained her appetite massively and has grown considerably.

Grace is doing another overnight saturation test tomorrow night and she will be starting her regularly 3 monthly IV's on 28 Feb (they are actually about a week early but we will be going away for Easter weekend).

I went out with some friends on Friday for dinner and after a few glasses of wine, managed to rope myself into salsa lessons. I am aprehensive, but quite looking forward to it, it was sort of taking a leaf out of the book of a very good belly dancing friend,whom I know finds this kind of thing very good therapy...... so lets see.

Not managed to get to the gym one single day in the last week, so I will be back with a vengeance tomorrow! can't wait.

Monday, 4 February 2008

The Teddybears Picnic

Grace had a rubbish 2007, she had been ill for most of it,and in and out of hospital culminating in needing a wheel chair already at just 7 years old.

We wondered what we could do to as a nice surprise because of everything she had endured without complaint.

It was her birthday yesterday and this is what we did-

We had a teddybears picnic. We had to go to the Build a bear workshop to get the necessary bears for the picnic and as the nearest workshop is in Solihull (which is half an hours drive away) we decided to hire a limo.

What a fantastic time Grace and five of her friends had choosing bears and accessories, they even got to stuff the bears themselves.

We returned home in the limo and had the picnic sitting on the kitchen floor on a picnic blanket followed by birthday cake.

Grace said it was the best birthday she had ever had...... but it is only what she deserves..... and still not enough in my opinion.

Pictures to follow-

Friday, 1 February 2008

Disabled badges

We have recently applied for the mobility component of the Disability Living Allowance, not because we feel we need this benefit, but because if you do not have it then you do not qualify for a disabled badge.

Grace has a wheel chair when we go out now, but we put on the application form that sometimes she can walk 50-100 metres and sometimes she can't, and on the days where she has walked the distance she can be totally exhausted and have to rest for hours afterwards.

The distance that she can do on 'good' days means that she doesn't qualify for any form of mobility allowance even though she qualified for the wheelchair and got it within one month of the request.

I really don't feel that we need the benefit and would rather it went to someone who would, but we could really do with a disabled badge and also, I can't understand that someone who knows nothing of this illness can decide who gets it and who doesn't? and why are the two connected?

All we want is to park a little nearer our destination and ease to get a wheelchair in and out of the car so that Grace doesn't get run over whilst trying to get into it.

Since having the chair she hasn't cried on her way to school because she is panicking that she can't get her breath and she doesn't want to be late, and its only across the road, its a little up hill and thats very uncomfortable for her, so how on earth would anyone consider that she doesn't qualify?

I wish I could emigrate, what a bloody stupid country........... not just because of the badge, but a whole lot of other things which make me less than patriotic now, things like people getting beaten to death in the street and then getting away with it, and people claiming for injuries and just the horrible state things are coming to and its just accepted, and meanwhile I feel like a criminal for daring to apply for a disabled badge!!!!