What a difference 24 hours can make. Today Leo is off all IV drugs and is just having Tylenol as and when he needs it. He had another unsettled night but seems to have woken up a totally different person. He is smiling laughing and trying to talk his way out of things he doesnt want to do..like being turned.
Today we finally met the famous St Louis physios. An amazing no nonsense group of physios that just seems to know how to react to Leo. The first session was basically showing us how to pick Leo up out of bed and even though he complained all the way through it Leo did agree once he was sitting in his wheelchair that it didnt actually hurt. Secret is to keep the back as straight as possible. Once Leo was in the chair we gained freedom from the room for one hour maximum. Leo was wrapped in a blanket and we escaped to the roof garden for some fresh air. Leo was amazed at the christmas decorations and they will be 'awesome' once the lights are switched on. After the roof garden we went along to the playroom. WOW what a room, every kind of toy you could think of and activity you would need is there, everything is clean bright and complete...no missing bits to these games. Leo chose connect four and candyland to take back to his bed so three guesses what we will be doing for the next few hours...
We got Leo back to bed in plenty of time and he allowed the help without to much complaining.
Leo doesnt seem to have his appetite back yet and we are struggling to get him to eat much at all so basically he can order anything he likes...yes l did say order.. you can select anything from the menu of well over 200 items and just ring the kitchen and request them, The telephone ordering is available from 6am to 8pm but if your child is hungry outside those hours the cafeteria downstairs is open until 02.15am and the nurse will happily go down and collect anything you want!
One thing that has happened today is Leo has developed red angry sores on his bottom that are starting to pus and smell, we think its an allergic reaction but a doctors already been to see him and prescribed something for tonight and arranged for a skin specialist to see him in the morning.
At 4pm (10pm uk time) Leo had his first official physio session with Mad Michael. He met us in the room and took us down to the physio room. He asked Leo what he wanted to do and Leo said crawl, Michael said 'no crawling here buddy its walking all the way' Leo of course complained and did so throughout the session. Michael showed us just how large Leos range of movement is and even took the time to show us by feeling if we are carrying out the stretches properly. Leo was asked to put his arms around Michaels neck and Michael helped him into the standing position. Looking down there was one obvious change Leos feet were totally flat to the ground !! He had put his feet flat without even thinking about it !!
Bless his heart within 10 minutes of getting back to his bed Leo was fast asleep...probably stay that way til morning !