Day Nine

We were up early this morning so we could get to our Occupational Therapy Assessment appointment at 9am. It was in the same building as the physical therapy but we decided that we would drive this time! I had to wake everyone at 7am just to make sure we all got breakfast. It did not go down well and very little breakfast was actually eaten by any of us. Confirms my thoughts about letting sleeping children (and husbands) lie when it comes to proton. It turned out to be a good job we drove - the smoke was very heavy this morning. It took all of 5 minutes to get there and park and be in the lobby! We were 10 minutes early.

We met Janet today. I hate to comment on people's weight but she was an extreme pear shape. There are unfortunately, an awful lot of very overweight people here. I can see why there are concerns. Americans do it large in a number of ways! Anyway, Janet was very sweet and explained that occupational therapy is about helping people to improve or adapt their methods for doing everyday jobs. She got some toys out for Millie and assessed her without Millie even knowing it. It was an interesting session. Millie got to build a tower with bricks (she got to 6), thread some beads (she couldn't do the smaller ones and got frustrated so Janet got some larger ones and Millie didn't want to play with anything else!), cut some paper (umm, sort of), draw some lines and circles (not great), do a very simple puzzle, and fold some paper to make a "book". When Millie was copying Janet to fold the paper Janet commented that she was a bright child. Good to know it still comes through even with everything.

The result? Millie is working at a level consistent with a 2 year old, and in some cases higher. So she is about 6 months off in all respects. We will be doing 2 occupational sessions a week on top of the 2 physical. Millie is going to be tired and we are never going to have a moments peace. Janet had some interesting comments. She pointed out that up till now Millie has been relearning all the skills she had before she was ill. The next stage is going to be tougher because she has to learn them from scratch. It sounds like we have therapy at just the right time. However, Janet reckoned that by the time we leave here Millie will be up to her expected level for her age! How amazing is that? I can't wait to see the faces of the staff at Moorland who were so concerned about her regression and who know her so well.

We don't know when all of our therapy appointments are yet. Janet recommended getting them in before Millie has proton and a general aneasthetic. Which is going to make mornings a fun and hectic time for the next few weeks. For now we have one on Monday at 9am and Tuesday at 5.30pm. They are going to try and schedule them at similar times in the week so we aren't in and out all the time. Can you imagine the NHS doing that? It will also depend upon Millie's proton time.

We are in tomorrow for our first proton treatment. It is, in theory, at 11:40am. We have to be there an hour beforehand each time. So tomorrow we have to get there for 10:40am. Mitch is picking us up at 10:30am. Depending on how long she sleeps for we may only have to distract her for an hour before leaving. However, I suspect she will kick up a fuss about going in Mitch's car. If we are doing therapy as well then we may end up using our own car. We meet Dr Danny tomorrow to find out more about Millie's treatment, for example, how many, how long and more specific details about what the risks are. I suspect we may then have to sign on the dotted line.

I have already packed some food up for her to take with us. Some lil' weenies (small hot dog sausages) from tea tonight, with some mash, and I have also got her some blueberries and a couple of yogurts (not the bright pink ones though!). I have no idea what she is going to want to eat but she will probably be so hungry that she will eat anything. I spoke to Jabob's Dad today. The proton machine broke down whilst Jacob was having his treatment so he was in for 3 times longer than he should have been. I think it was better that he was in rather than waiting for an extra hour without being able to feed him. Shavan is now halfway through his treatments and was given a CT scan at the same time.  I just hope that it is all plain sailing tomorrow and for the next few days.

I have no idea whether we will be able to skype home tomorrow. I suspect it will take a while for the first proton session. That is certainly what I have heard. We'll see. One step at a time.