One week in

One week in! And oh boy, what a week. Something else new today and more coming this week. We won't have any rest soon. Glad we took some time out at the weekend.

We were late getting up this morning - 8:45am. To still be in bed at such a time is unknown at home. And we are getting later each day, not quite sure why. Our routine has been moved by an hour anyway because tea is not dished up till 6pm at the earliest. Millie would normally eat at 5pm at home so we are an hour later getting her to bed as well. Tends to be about 9pm when she is finally asleep, instead of 8pm. This means that she is naturally an hour later waking up and with no eldest to disturb us we all sleep for longer anyway!

By the time we had got Millie dressed, had a leisurely breakfast, had a chat with Doris, a old lady volunteer who originally comes from Scotland (came over as a child) and chose some kids sunglasses from the box of them that had been given to RMH, it was gone eleven! The next hour seemed to disappear (oh yes, my husband cleaned the room floor!) and before we were aware of it we only had 20 minutes to get ready before leaving for Millie's physical therapy appointment. The hospital is supposedly only a 10 minute walk away, so we walked. Little did we know that it was very, very hot outside and that the road we were walking along was very busy and went across the ramps to get on and off the interstate. So, in the end I think it took about 20 minutes to get there and we were baked. Millie fell asleep! We can see the building from RMH but we couldn't find the entrance and we couldn't find any "ped xing"s (pedestrian crossing) nearby. I think we will be going american and driving next time even if it will take more time to get in and out of the car. To give you an idea, it is as far to walk as it is to the school from home! But walking in that heat is just something else. Nobody else was out!

For every appointment we have had so far I have had to register Millie's details as a new patient. This involves being early and spending 15 minutes filling in the same questions that ask about why we are here, what her medical history is etc etc etc. Today was no exception. Only once those forms were completed and signed by me were we allowed to meet Debbie who evaluated Millie's physical abilities over an hour or so. Millie, who had to be woken, was a bit slow to want to do anything but she eventually got into the spirit and took part. We found a toy that amused her (chickens racing down 2 spirals) and Debbie moved it to various places in the very large and well equipped therapy room. It was put on different height tables, up ramps, down ramps, up stairs, down stairs etc etc. She did really well throughout the whole session and by the end of it was asking to find another toy! She was given the chance to use a trike that was just right for her size and she was actually able to pedal it a bit. She really enjoyed that and was not impressed when Debbie lifted her off to try her on something else.

Debbie reckons that she is doing amazingly well considering where the tumour was. She sees patients who have had a stroke in that part of the brain who shake and never fully recover. The preference for the left side seems to have almost gone, Millie was using both hands to pick the chickens up (good squatting technique!) and transferring them from hand to hand. Her feet are close together when standing which is a sign of good balance. Interestingly, they were further apart only last week at home. And her odd gait that I was a bit concerned about last week has gone. Debbie reckons she is currently at the level of a child about 6 months younger than her and will very quickly catch up and not have any lasting problems. Her operation was 8 weeks ago and she has come such a long way since. I find it pretty incredible.

She will have two half hour sessions of physical therapy a week whilst she is here. The next things to work on with her are improving her balance. To do this we need to be finding different environments for her to be walking in - for example the beach or a dimly lit room. There are 3 physical factors that determine the ability to balance - feet, vision and inner ear. We can't do anything with the inner ear but we can alter what she is walking on and how much she can see. We also need to be encouraging her to stand on her toes (a favourite past time anyway), jump (she is beginning to want to do that as well) and ride a bike (we are going to buy a suitable one whilst here and probably donate it to RMH - not sure we can ship it).

We have an appointment for occupational therapy on Wed morning (we're driving!). Occupational therapy is to do with using your hands so it will help her learn how to dress herself, how to use utensils for eating etc. With this level of help she will be up to speed and surpassing other children of her age when we get home! Coming here really is the best thing for her and not just for the proton therapy. She would not get this level of support at home. I hate to say it but it is true. I am so grateful to the NHS for paying for ALL of her treatment over here. However, it looks like we are not going to have any spare time.

I had an email from Amy, our proton nurse, this morning. Millie starts her proton on Thursday. She is currently scheduled for 12pm and we have to be there an hour before that. As yet we don't know how long it will take to treat her and for her to recover. It could take 2 hours. And it might all be running late, which we won't know until we get there. Her time might change, they are doing some rearranging as some people are finishing this week. Amy will confirm tomorrow. BUT, it currently looks like we will be in hospital each day when we would normally be skyping home. Not sure what to do about this yet. It is going to be hard work - and it is just dawning on me how hard. Now we are nearly there my mind is starting to work out how we are going to manage everything. She can't eat for 6 hours beforehand (from 6am in this case) and can only drink clear fluids upto 3 hours beforehand (9am). So, do we all wake up early and have an early breakfast at half 5, or do we hope she sleeps and try to keep her distracted for 3 hours? I do not have the answers yet.

Jacob started his therapy this morning. They all got up at half 4 to give him breakfast and then hoped he would go back to sleep. I don't think he did and he didn't fancy breakfast. His therapy went ok. He was very tired this afternoon - probably because his sleep pattern was disturbed - and went to sleep during tea. So he then didn't eat. But he was up again when I was putting Millie to bed. They let him sleep for 5 hours during the day a couple of days ago because he was tired from the chemo. But he didn't settle at night. It must be hard, but I would try to keep him in some sort of routine and I guess that answers my question (sort of). Whatever we do it has to be consistent, well as consistent as we usually are and as consistent as we can be. But I think sticking to our normal small routines and sleeping when we are supposed to is probably the way to go. So, no waking up at 5am! I think I might have to secrete some cereal bars about the place and sneak off to the loo to eat them!

The weather changed today. One of the reasons it was too hot to walk is because it was! It reached 95 degrees F (35 degrees C) today and is expected to go over 100 F (38 C) on Wednesday. And because of the heat and being near the coast (it's a half hour drive away but for america we are near the coast!) we get a lot of humidity which leads to ...... thunder storms in the afternoon. It RAINED!!!!! The temperature didn't really drop but it got wet, very wet. When it rains, it pours down. Just like one of our really heavy winter showers. There was water everywhere. The lightening was very impressive - we could see quite a bit over the river. The rumbles weren't somehow too loud despite coming over head. Not sure why but do wander whether it is to do with the space. We didn't get the load crack of thunder when it was directly overhead. Millie actually fell asleep when it was overhead! I told her it was the clouds bumping, she didn't seem at all bothered. But we had been listening to the rumbles and watching the flashes since about 4pm. They did go on for hours, stoping at about 10pm. This is the normal weather for this time of year. We will be so used to it by the time we leave.