This will be a very quick one as it has gone half past midnight already. We have both just been putting our numerous appointments into our respective phones. Tomorrow we have proton at 11am and occupational therapy at 5:30pm. On Thursday we have a hearing test at 8am at Nemours Hospital which is just across the road from here. Then occupational therapy at 9am at the Aetna building which is at the top of the road. Then proton at 11:30am and then finally a pediatric check up at 4:15pm back at Nemours! Not sure we will have any spare time between appointments. Actually, we might be able to fit in a distracting skype between OT and proton. However, I am hoping that Millie will fall asleep for a bit after OT and we can get breakfast and a large dose of caffeine. I think we will all be shattered by the end of Thursday.
Today has been a bit of a washout. Mainly cos none of us had the energy to do much but also because of the heat. We did think about going to see the dolphins this afternoon but Millie was adamant that she doesn't like dolphins and kept doing a runner so that I never got the chance to pack anything up! It was also very warm outside. Someone said their car was saying 100 degrees F but the official reports say 96 F, which is about 36 degrees C. Even now it is 83 F which is about 28 C - higher than the average mid summer temperature at home! This evening after tea Millie wanted to go outside as normal. It was just so hot and humid you felt wet as soon as you stepped outside, and the play area doesn't get any sun at that time of the day. The adults just sat. The kids ran around as if they didn't notice but Millie went bright pink with the heat. She cooled down pretty quickly once we got her back in to the air conditioned building. She had quite a bit to drink before bed though.
This afternoon we went up the road, a 5 minute drive and something that we would be able to walk in about 15-20 minutes in normal temperatures, to see Friendship Fountain. It has been closed for renovations but was re-opened yesterday. The park it was in opened in 1965 and the fountain was the "worlds largest and tallest" at the time. It was 200 ft wide and could shoot water 120ft high through 63 nozzles at a rate of 17,000 gallons (presumably US gallons) a minute. The park area was reduced by half when a restaurant and museum were built there some time ago. The museum is MOSH which we went to last week. As far as I can work out the renovations where to improve the whole general area and park bit. It certainly looks good, and the fountain is huge. We followed the river for a bit but there was very little shade and very little breeze so we stopped wherever we found either and took it really slowly. Eventually we had to give up and head back to RMH. Millie was looking very pink and hot. We will have to go down one night because they have a coloured light show every night. Although we may wait until it is cooler.
The temperatures may drop in a few days. The forecast I was looking at had them dropping by 10 degrees by Friday. However, the risk of thunderstorms increases. Not that we would mind that at the moment. We are all looking forward to getting back to a normal british summer and the rain!
It was really nice to watch the girls interacting through skype today. It's amazing what technology can do! However, being reminded of home is causing some problems with Millie. She keeps saying she wants to go to her old house. And at bed time tonight she was practically out of the bed saying she wanted her old small bed. The poor thing is desperate to get home. It's a difficult age for her to be here - she is too young to understand why but is old enough to have a memory of home and want to be back there. However, in a few months time she won't remember this (much) and I think it is still easier than having to bring an 8 year old or a 12 year old out here and dealing with all the emotions of having cancer and being treated away from home must bring.
My Dad came up with an interesting question. What would happen to a local child of the the same age as Millie with the same symptoms but without health insurance? From talking to people and reading an article in yesterday's paper we have an idea but ... if anyone does know we would love to hear from you.
Must go. Proton tomorrow at 11am. Hopefully Millie will sleep till 9am like she did this morning.
When you have Little Feet and it's a Long Walk, you take One Step At A Time.
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