well it's kinda being another hectic month, we haven't had many appointments since it was coming up to Christmas.
Owen has only just got better after nearly 3 months with a viral infection and on and off chest infection he still has thrush which will not budge but were still trying to get rid of it, but Owens' finally a little more himself he doesn't have a rash or tired or any of the other symptom's.
Owens' had a really good month when i look back and think how ill he was last year and i nearly lost him due to the doctors at are local hospital, if it wasn't for the doctor's at Leeds' hospital he wouldn't be here know so i can never thank them enough and never actually realize how much they actually did for us.
Owens' had a really nice Christmas he got lot's of presents from Santa, and lot's from family and friends, i don't think he know's what Santa is or what was actually going on, but he liked the noise of the wrapping paper, the only downside to Christmas was the pain Owen has being in, he was in constant pain if he was sat on my knee, but if he was layed down on his back or side )mainly his side) he was fine, that's due to his hip's so i can tell there getting much worse, he's even tolerating being on his back during the night know, once he's asleep I'll turn him on his back and he's fine which is great as he was starting to get bed sores and it's not that good for his hip's he's not tolerating his equipment though he will not go in it for a long period of time as the pain is to much also he has started to put his head to one side and sometimes if i move it he will cry as it's got used to being there.
Owen hasn't seen his dad this Christmas due to his dad apparently working constantly, but i don't think it's to much to ask for a couple of hours to spend some time with his own son, but he's not bothered, he's not going to see Owen also again until he sort's himself out and grow's, Owen cant be going back and fourth and I'm not having him somewhere were it's dirty and no proper bed for owe he seriously need's to sort thing's out because I'm not letting Owen go downhill because of his dad not doing things properly, (rant over).
Owen got his passport back a few weeks ago, I've being trying to get hold of make a wish foundation to speak to the lady helping make Owens wish come true so it can finally be booked, but IM having no luck, were hoping to go the end of February or end of march depending when i get hold of her, but I'm so excited and it's something we can all look forward to and it will be a once in a lifetime thing for Owen which will be amazing for him, also we are going to see Owens' specialists in Leeds in Jan, so we will see if there is anything planned for 2012 in Leeds' operation and treatment and test wise.
i do sometimes wonder what actually goes on in Owens head and what he actually thinks of, because we can just think something e.g. lets go for a bath, but Owen doesn't even know what anything is anymore, he only really know what bed is but then i still don't think he does as he smiles when i say bed but cry's when he's in it, like on Xmas day he doesn't know what Santa is or why he has all the presents he just liked the sound of the wrapping paper when it was being ripped, it would be so amazing to actually know what he thinks that's if he even does think, but to know what's actually going on in his head would be amazing