Monday, 31 May 2010
Wow, Hi everyone,its been a long time. There has been so much going on, I don't know where to start.
Home life/work/family...all totally crazy, and although that's nothing new, it has been getting on top of me more than usual. Six more hours in the day needed here!!!
Deions been in and out of hospital quite a bit, had a few bugs and chest infections. He has a nasal gastric tube now so he can have special calorie laden milkshakes right into his tummy. the swallowing got so hard for him that he just couldn't stay well, so we have this tube temporarily until his has the operation to give him his gastreostomy on the 17th June. I've forgotten how much is involved, all the ordering of the supplies (from four different places) the tubes, syringes and pumps...wow, but its all come flooding back.
The botox in his legs didn't make all that much difference,despite three hours of stretches a day! so he has to have the operation on them, but that's a few months down the line, and we have been having hydro therapy every week to help with the pain and movement...then a few months after that, he's having an operation to reroute how his bladder works, which is a positive thing because he'll have more Independence.
He is having his muscle biopsy the same day as his gastro in a couple of weeks to save an extra anaesthetic. We have made the very hard decision, that if the biopsy shows nothing, we are going to draw a line under it, as it were, no more tests, it will become an obsession, and we still have to live and be happy. Nothing is going to change Deions personality, its too big for that LOL! but I don't want his whole life to be about finding out whats wrong instead of living. And quite simply, there aren't always answers.
The other kids are great, Robyn just finished work experience, and I felt very old as she left in her grown up office clothes every day...Her and Jordan are both in the middle of exams now and are not stressed at all, which is not how I remember my exams being, we're having no tantrums, no all nighters, no ripping the hair out and throwing text books out the bedroom window...weird!!!
Better go, sorry, no time for frills or pictures, I will be back soon, I promise, I have some hilarious work stories and lots of news on other stuff, I hope you are all well, miss you all.