Day Sixteen - I think!

I would say that the day has been the same as yesterday because it feels that proton is becoming routine but it hasn't! To start with proton was scheduled for half an hour later than yesterday because they start later on Wednesdays. I think they have a meeting in the morning. They run the 3 proton machines from about half 6 in the morning all the way through to 10 at night, and fit in about 100 people every day. It is very, very efficiently run. Today, whilst waiting for Millie to finish I was struck by how much of a buzz there is. Which is very strange in a room full of ill people waiting to be treated. I remembered my Mother's comment from a few days ago about how it can be quite depressing being in a room of ill people. It really doesn't feel like a room full of ill people. The place does not feel like a hospital at all. It is more like an office or the front of a leisure centre or something but definately not a hospital. There is a lot of light, a lot of space, comfy chairs, tea and coffee, newspapers, a very friendly receptionist who knows everyone and has lollies for the kids, various support staff talking to people ... It is an environment that patients get to relax in before treatment. Everyone is very friendly and talkative but then we all spend some time there everyday so you get to know the faces. It is all very different and I really don't see it transferring to the NHS well. Maybe a private facility but not the NHS as it is. Although I think both countries could, and should, learn a lot from each other.

Millie woke later than normal this morning but still about the same time before we had to leave. I think she knew! She was ok before we left but was not happy with being there to start with. We were a bit late leaving so she probably picked up on our nerves again. Also, with it being half an hour later she seemed to get hungry and that caused some grumpiness. However, once she was hooked up to the drip (after the normal battle to get a wiggly out) she was fine and we did our normal thing of going to the red room for a dance and some sleep on Mummy's shoulder. She is absolutely fine when she wakes up, well, as soon as she has her sock on! She was woken by Shevan crying today so she didn't sleep for long. Today she had some blueberries, some tuna mayo and 3 yogurts!! I'm not sure what she remembers about going to sleep. Part of me thinks she doesn't remember a short time before it because she is unusually happy to wake up in a different place. But she must remember some of it otherwise she wouldn't be happy to go back in to, what would be for her, a strange room. Oh well! I'll probably never know. And as long as she is happy I won't worry about it. But it would be interesting to know. We are back to the normal time tomorrow but have been allowed to come in a little bit later. Shhh! Don't tell anyone!

We hung around the place afterwards for quite a while sorting some things out. I wanted to see Amy, our nurse, to check whether we still had a hearing test at 8am in the morning. That has been cancelled and will be resheduled at a time more suitable and to fit around our therapy and proton sessions. Imagine that happening at home? We really are in the best place for now. Whilst waiting for Amy, another little girl came in. I only know her from seeing her briefly on Tuesday and from the Proton Therapy Support facebook page. She is called Mia and is 3, she finished her proton on Tuesday and was given the obligatory cake by the nurses. She was wearing a pink t-shirt that said "Got Proton" on it and she did a dance in the foyer when she left! I commented to her mum on facebook that I thought our Millie would love to dance with Mia. We all met very briefly this morning and, I think, they are flying home tomorrow. It's a shame Millie and Mia couldn't spend time dancing together. But it was good to see Mia finishing and looking so good.

Millie got her pink t-shirt today.  All the kids get given one that says "Got Proton". You can also buy them and various other things with the University of Florida on them. There was a lady in the waiting room selling clothes and bags today. She is thinking of getting some drawstring bags which would be perfect for Millie to use at nursery. We have said we would love a red one!

I also wanted to catch Katie, our social worker, and thank her for the information she had given me regarding places to take a toddler to avoid the smoke and heat. I had also asked her whether there was anywhere to skype from and she had wandered whether we could do it from the computers in the library/reading room. We don't think you can because there aren't cameras but I'm sure if you could then all the british families would be doing it! Katie said that she would talk to the tech guys to see if they can install it, although it won't be a quick job. It would be really good if they could.

We eventually managed to leave UFPTI about an hour after Millie woke up. I think it was good for her to spend some time there after her treatment. It shows her that it is a good place to be. She was quite relaxed and was playing hide and seek behind pillars with Daddy! We then went to Walmart. The first time we have gone somewhere other than RMH after proton. We must be getting brave, that and Millie is recovering from the anaesthetic really well. She was barely wobbly today and in Walmart she was walking next to me and I didn't even think about her possibly being wobbly. We picked up a few more toys for her - some playdoh accessories, something a bit like stacking cups but with more flexibility and a ball, and some bath squirters. I am forever hopeful that I will get her in the bath before we leave here! It's a small bath and it would be a good one to try getting her into bathing again. However, I suspect she now thinks she is frightened of water, despite loving washing her hands. We also picked up some blueberries, yogurt and full fat milk.

After tea (pizza for the second time this week - I think they have had a few problems with volunteers not turning up) we went for a walk down to the little 'park' area to see if we could see dolphins in the river. Apparently they like to play when it gets cooler and before the sun goes down. We didn't see any so we will have to try again. We did see, and feel, lots of little biting flies. The bites that we have been getting are not very nice. They itch for days afterwards and mine feel worse when they get hot, i.e. when I go outside. I don't normally get bitten but I have 3 or 4 bites on each arm at the moment. Millie hasn't been bitten yet - touch wood. Whilst in Walmart we also got her some new pyjamas - they are red(!) with dogs on. It made it really easy to get her changed into pyjamas tonight, shame she still fought going to sleep!

We have to be up early tomorrow as we have occupational therapy at 9am at the Aetna building. We could probably walk but the traffic will be heavy, it'll be hot and the smoke has been really heavy in the mornings these last couple of days. So we will probably drive. I hate thinking like that. We also have a pedeatric check up at 4:15pm at Nemours, which is across the road from here so we can at least walk to that! I might not even take the pram!!! I am hoping that Millie will fall asleep between therapy and proton which will give me the chance to sit down and have a much needed coffee, and probably breakfast.

5 down - 28 to go!