The neverending tunnel

Got up this morning and did the usual routine of physio, washed and dressed, breakfasted, IV's, tobi nebs and other oral nebs. (So matter of fact about it now). Infact I have thought about making short film for people to see what Grace has to do in a day.

My middle daughter Faye is studying performing arts at college, and part of her course work was to make a short film which she has now submitted, but upon discussion we thought that with hindsight we should have made a film about Grace.

So it will basically show what her routine is for the day, how many meds she is on and at the end show a friend commenting " you would never know there is anything wrong with her".

Graces first day at school on IV's upset the teachers a great deal. Generally Grace is a fighter and won't give in to anything. I told her she could come home from school when she had had enough and I tell her to sit down and have a rest all the time, but its as if she has this agenda to fit in everything now. The EA was distraught when I went to collect her at 3.30, she explained that Grace had looked very pale and blacked eyed, a bit like a panda and she really looked like she had struggled through the day. I explained that she is normally like that for the first few days, but then perks up, and true to form she is now bounding to school in the morning, (except for the bit where she feels sick because she can't stand the tobi nebs, but does it anyway). She has this little trick of belching all the way to school until she feels well enough to eat a sweet.

The teacher says we all just take it in our strides and never seem to get dragged down. I told her believe me we do, but we see the things that go on inside the house everyday, whereas outsiders never get to see. Hence the idea for the film.

Grace is due in clinic again on Tuesday, she will have completed 12 days of IV's by then. The nurse seemed to think that she would remain on them an extra week, but I can't see it making any difference how long she stays on them, presently whatever they try she is symptomatic again within days. Honestly since Christmas there has been no let up.

I've been to the gym this morning and I did a 30 minute run today, I did a few abs and that was about it really, I was just happy to get a good run in. I have had a lot to do again this morning. This included the terrible job of choosing flowers for a funeral, it would seem that we have lost a lot of people around us in the last few months, the latest being another school friend of Kristi's aged just 23. Things like this really do make you think deeply about what is and isn't important in life don't they.

http://http://tryitandsee.blogspot.com/2007_05_01_archive.html

I have decided today that I am going to buy a big hat (in loving memory of Chris) as he and his Mum like their hats, and I'm going to Ascott...... just need to find someone to go with me now, the majority of my horse racing friends are male and they don't really qualify for ladies day. My partner in crime (Mum-in-law) will be on one of her many holidays and Mark will be working as its Ascott, so I am open to any suggestions. Its a shame my niece lives so far away, but I might consider dragging her to the Kentucky Derby next year..... mmmmm now theres a thought.