Daniel and I had a pretty terrible night's sleep, which perhaps was to be expected when you consider he is now only on Tylenol (American Calpol) and the odd bit of ibuprofen overnight, so woke about every hour in pain, and needing to be turned or given medication. However, I am not going to dwell on that because......... the people who told us that Day 4 is a big improvement on Day 3 WERE RIGHT!!!
Daniel woke pretty relaxed, despite his awful sleep. He ordered his breakfast (the food here is 'on demand' so whenever the child is hungry they just choose from the menu and you phone up and order it. It then arrives within 45 minutes). While we were waiting for it to arrive Keith, the orthotist came and took casts of Daniel's feet, ready for his splints to be made. This was surprisingly non-messy, and Daniel got to choose the pattern he would like to be on the plastic, straps, velcro etc while it was being done. The splints should be ready in about 10 days, by which time we hope Daniel will start to be ready to use them!
We had therapy due at 9, so just before then we lifted Daniel out of bed and into his chair. This was still painful but noticeably easier than yesterday, and we set off down to the Therapy Centre on the 4th floor.
Therapy went well. Daniel is extremely weak - this is not only because he has had a major operation, but also because the spasticity (tightness in his body), while being the main thing that was preventing him from moving normally, was also the thing that was holding his body up. Therefore, with that removed he has very little normal muscle tone, and it needs to be built up gradually from scratch. However, our physio Nicole was again excellent, knowing exactly when she could push him a bit further, and when to stop, and we managed more than yesterday.
Nicole said that after the session he should aim to stay in his wheelchair for 45 mins to an hour, so we set off to the shop and to reunite Daniel will his 'balls machine' that he has missed over the last 5 days. He actually only managed 25 mins before his back was very sore again, but it was big progress and we returned him to bed feeling pleased.
He then rested for a little while, before ordering his lunch. He also decided that he would like to get dressed for his afternoon physio, and that he couldn't stand having a nappy on any more, so we put on his own pyjama top, with his shorts and some pants, and then set off for our second therapy session at 1pm. Again it went well, and his arms were noticeably a little bit stronger than this morning. The therapist talked us through all the stretches and exercises we need to do every day once we are discharged (on top of the hour of physiotherapy in the hospital as an outpatient every day). She then got Daniel sitting on the bench (with support) and did some throwing games, at some skittles. He enjoyed this, until he started to tire and his back hurt.
Again, he was meant to stay in for his wheelchair after the session for up to an hour, and we were certainly aiming to beat this morning, but in the end we only lasted 25 minutes as Daniel started having muscle spasms again, which shoot down his spine and then make his legs jerk. These are extremely painful (although quite common after the first few sessions of therapy, when the body has been worked) so we had to return to the 12th floor to give him some Valium and hop him back into bed. He then rested for a couple of hours with the TV on.
Poor Lucy, who has barely seen us for the last 5 days was a bit desperate for a bit of Mummy or Daddy special time, so since Daniel was much improved, Grandma and Grandpa brought her in and left her with us for a few hours so we could be a four again. Rich took her down to the siblings' playroom and they spent some time playing there together, and then they both came back up so she could chill out with Dan, and they could both order from the menu together for their tea.
Once they had eaten we still had our third bit of 'physio homework' to do, which was a third session of wheelchair time. Ideally this would have been an hour, but by this time Daniel was both tired and achy so 35 mins was our maximum achievement. He did some drawing and colouring and then we set off to see Daniel's friend Brooke, who had her operation straight after he did on Thursday. Today is Brooke's seventh birthday, so we went round to wish her a Happy Birthday and give her a little present. Unfortunately Brooke too was doing her 'wheelchair time' homework and had gone off somewhere in her wheelchair so we had to leave it all on her bed and come back again! Never mind - Brooke's family are staying just along the hall from us in the hotel so I am sure the two of them will see plenty of each other in the next few weeks.
So now Daniel is finally in bed and we are waiting for his medication before Lucy and I set off back to the hotel. Tomorrow we have only one session of therapy at 9am, and then later in the morning (all being well) we should be DISCHARGED - woohoo!!!
As a final point - Liza and Jessamy, this photo is for you, with very grateful thanks!