The Start of Week 2 of Proton

Firstly, I would like to thank everyone in our small village for all of your support and all of your fund raising efforts.

Thank you to everyone that helped with the Breakfast Club on Sunday.
Thank you to everyone that donated food and coffee and musical talents etc at the Breakfast Club.
Thank you to everyone that attended and had breakfast.

Thank you to Sandy and Jim for your cycling efforts. I hope you recover soon.

Thank you to our primary school and in particular Year 6 for organising a bring and buy cake sale.

THANK YOU everyone for your support. We really, really, really appreciate it.

A short(ish) blog tonight because it has got late and I need more sleep!
Millie was very tired this morning, after yesterday, so I woke her up as late as possible but in time to get her ready for occupational therapy (OT) at half 9. We had Diane again today, it was nice to have a familiar face. She had Millie throwing and catching a ball and then we went and built towers and things with some bricks. Millie was really not very interested and it took all three of us to encourage her. I still haven't worked out whether the therapist wants us to be involved or not. I just have to assume that if we are in the way she will say!

When we arrived for OT we were told we had physical therapy (PT) at half 10. So after OT we went for a little wander out into the hospital grounds and walked along the river for a bit. We got to see one of the huge and very slow trains come over the railway bridge. It had 2 engines and 26 carriages, and when I say carriages, each one was carrying a shipping container, some were carrying 2 containers! The railway line runs a few blocks away and we constantly hear the horn of a train as it goes, very slowly, through this highly populated area. The railway bridge is one of those that lifts up so that boats can get through. To the satisfaction of my husband we also saw how the bridge operates! It was then time for PT. Millie was so hungry and tired that I didn't think we would get anywhere. However, Gina (yep, another new one) gave Millie the chance to choose any toy she could see in the huge and well stocked walk in cupboard. Millie chose a house which came with Winnie the Pooh and friends. Gina put the house at the top of the stairs and made an obstacle course for Millie which involved a balance beam and a slope made of crash mats, as well as the stairs. She then encouraged Millie to take the small characters to their house, through the obstacle course, and play in a slightly crouched position. Millie was exhausted by the end and refused to walk the stairs anymore! She just sat on the bottom one!

We have been given a list of appointment times for OT and PT over the next few weeks. We seem to have both on a Tuesday and Thursday which I'm not sure is a good idea. I think it is going to make her very tired which will mean that getting to proton whilst happy is not going to happen. However, I'm not sure that doing something for four mornings is going to work. And I'm also not sure about doing them in the afternoon because she can be quite wobbly. I will talk to Amy tomorrow.

Proton was tough. She didn't fall asleep on the way and she would have benefited from a few minutes. We got through the wait, they were running 20 minutes late so it was a good job we were late after therapy. However, she wasn't happy when the nurse (someone different and I can't remember her name) flushed her line and attached the drip. Although we did eventually distract her but it is getting harder and I don't know whether that is because we have run out of ideas and energy. When we took her into the proton room she was fine to start with but she then saw the anaethetist pick up the drip line and start to put in the anaesthetic. She started to cry and object quite strongly until she passed out. She came round ok and was bright and chirpy once she had some food inside her but I really don't know how we are going to manage this for the next 5 weeks. It is going to get worse if we don't do something. And I will be a nervous wreck. I am pretty sure that Millie can feel the fluids going into her through the line. She certainly has when Petra flushed her line and she complains that it is cold when it is done here. Although it doesn't hurt it is obviously an unpleasant feeling for her. I spoke to Kim about it. Her job is 'Child Live Specialist', I have no idea what that means but she is employed to help kids get through their proton treatment as easily as possible. She is going to join us tomorrow and bring some things to distract Millie at the right moments. She suggested trying to distract her with something that is textured or touch associated so that she doesn't notice the fluid so much. We will see how it goes tomorrow. Hopefully it will be better but Kim is going to work with us for as long as we need her to.

We had a quite afternoon of playing inside and doing bubbles outside in the soft, warm rain. The bubbles worked really well at entertaining her and in giving her lots of practise with turning, looking up and down, reaching up, squatting and hand-eye coordination. We will be doing that one again! She was exhausted at tea time but, yet again, she had a second wind at about half 7 and despite being in bed for half 8 didn't fall asleep till 10pm. I had to rub her feet again - I think she is getting to like it!

More OT tomorrow, followed by day 9 of proton.