I went to the gym this morning. I did a 27 minute run and a cool down, then I did some floor work (abs mainly). I'm hoping to go for a road run Thursday morning and the gym again Friday, I wanted to get at least 3 sessions in this week. Lately I have been so busy that I can't even take a leisurely morning at the gym these days. I used to love to run and swim and then have a coffee, but it seems I have to get things over and done with and get going onto the next thing.
Today I met Mark at Starbucks and we had a nice coffee, he's off work today and tomorrow, he did his banking whilst I was at the gym and we had the rest of the day to ourselves. We spent the afternoon watching the horse racing and trying to pick the forecasts on each race (because we normally do pick 1st and 2ND between us if we've not got any money on it).
Grace has been to school this week despite being on IV's, she had a tough first day yesterday, but seemed better today, although she is very tired now. I think the meropenum is affecting her appetite as she is not normally difficult to feed. Today she did eat her packed lunch at school but could barely eat her breakfast and has had two b b q chicken wings for tea and a flaked cornetto type ice cream.
The nurse came out yesterday to check her tobi levels and she said that judging by the way she was yesterday then it would be unlikely that she gets taken off IV's after 14 days because her cough had become considerably loose. Which is complete piffle as she always gets a very loose cough as soon as she starts IV's, I think its just the meds digging up all the rubbish from the bottom of her lungs which wouldn't come out without help.
Tomorrow we are due at BCH for Graces 6 monthly check. It has been re-arranged once already so that Dr Weller could see her at Coventry clinic, but he missed us due to traffic problems. So this is the new appointment which we have now cancelled again today as she is being seen at Coventry on 22ND of this month. The secretary asked us when we would like our next appointment so we asked for September which will put us back on par for Graces 6 monthlies.
All the same we have decided to have a day in Birmingham and break the week up for Grace. I know she should be in school but a little treat doesn't harm now and then especially as the school knew she would be out today anyway. I'm sure they will give her homework to catch up and she will complete before the majority of the children that should have done it in class.
I did write a considerable few paragraphs on the educational system, but decided to delete it because it was nowhere near as edumacated and eloquent as a learned friend has written recently......theres no worries of me ever becoming Prime Minister.
About Me
- Gilly
- I am a parent of a child with Cystic Fibrosis. I don't go to work anymore. I was an administrator for many years but now feel I want to spend my time caring for my daughter. I have raised money for the cystic fibrosis trust through lots of channels from baking cakes to running the Hydro Active Challenge, and will continue to raise money and awareness as long as I can.
1 comment:
I agree! Complete "PIFFLE!". LOL! Now there's a word.
We still get some staff saying to us and Sas. "Well, she's responding really well to the IV's so maybe the Dr's will let her go home early." This is after just about a weeks worth. Bless em!
Sas never made it to her second lung func. pre-annual review due to granddad's car breaking down so we'll find out what our main consultant says Thursday at the review. What has been said is if Sas doesn't respond to the increased 40mg prednisolone then they have her in for anti-fungals by IV. She has been looser, but also had a slightly raised temp last night.
Keep well Grace, MoO and erm.....Marky too!
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