Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 June I am answering your mail in reverse order here. LOL We average 3-5 hours of broken sleep a night, up an ddown to and Rosie with an ocasional visit from or christina in between. We have just learned to cope on that, when we do get a chance to sleep all night it is wonderful but I always wake up feeling worse than ever:-) When is gunky causing him to wake up we do 20 mintues of physio and a neb and he usually manages to go back off, we either put a video or some music on for him and he goes off, when he is really bad he may need a trickle of O2 to help in rest. It may be worth asking the hospital to do a sleep study and see if you are oxygen depleted in sleep. Having a trickle of oxygen overnight may just enable you to get a better nights sleep. I always think I can cope far better with whatever the day throws at me if I have had a reasonable nights sleep. How do I stay upbeat? Well an assurance that God is in control is the main drive in my life. I know that I am where I am doing what I am doing because He has placed me here! I know that Satan will tempt me but I know that GOd is almighty and will keep me forever in His arms. Also knowing this life is not all there is means that I don't get hung up on how unfair or unbalanced or even how downright awful things are because God has promised me that:- "the sufferings of this world are as nothing when compared with the glory that is to come." Setting my sights on Heaven, knowing that God loves me and only wants the very best for me, Knowing that whatever I am going through Christ went through worse and He did it all for me, Jesus did not deserve any of that punishment, and as a favourite hymn of mine says, It was my sins that held Him there. So what on earth have I got to comlpain about?? I can assure you though that I often do complain and whinge and grizzle, particulalrly when my kids are in hospital and I am having to struggle with the nursing staff not listening to me!! LOL hugs Tina Hillier Mum to , 14 years old and possesor of an Extra Special Chromosome. Rosie 12 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 7, A budding Artist and Singer, And who is 5 years old and a lovely friend! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@... www.cdlsrosie.homestead.com ALL-NEW Yahoo! Messenger - all new features - even more fun! Quote Link to comment Share on other sites More sharing options...
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