MARCH 2010
Owen is know on medication as he is to strong and need medication to lower is muscle tone, and also some medication for his mounth reflux to try and help him swollow food better, i have to say i don't think this is working myself, but i think to just give it time.
Owen has had even more and more tests, he's has a hip x-ray that came back saying his hips are fine but there is some deformity in his coxa vigal, witch i do not know what this is, i have research the internet and does not give me and actually answers, he also went to have a video swallow test to see if he was swollow properly, which he was there was know fluid or food going into his lungs but that does not mean he still may have problems with eating and digesting his food.
Owen has just started nursery last monday and he's ajusting to it very well, i am so happy he is finally going i have being looking for funding for months, and finally disability team are funding him untill he's 2 then he'll get one day paid for and one day free, it's so weird leaving him and not know what to do i have being with him every day sence he's being born except when owen will going to his daddys house every other weekend, i don't like it when he crys as he knows im leaving him there, its so so-real as i cant really get my head round that owen does know hats going on, as he cant communicate to tell me all he can do is smile or cry, i like it thats i do have some free time, but i miss owen so much and i don't really know what to do with myself at the moment, i think give it time and ill get used to it.
owens going to leeds hospital this tuesday to see the nuroligist i'm looking forward to it as it may help with answers, but at the same time it feels like going round in circles as he's had so mant tests and seen so many people i'm starting to think nothings going to happen. i have herd though that 2 little boys with more or less have the same symptoms as owen and there parents have being told there child will be sitting up at 3 years of age and walking at 5, and that gives me so much hope to think owen could be sitting and walking, it will make life so much easier as at the moment it is so hard, and just keeps getting harder, owen has got a new special pram frame, that is specialist chair fits in, and i know this is not suitable for owen he can push back so much thats his head will come out and bang his head on the frame.
Also owen's weight has dropped and i've seen a community nurse about feeding tubes incase he looses any more weight, owen weighed 9.9kg two weeks ago and is now 10kg, owen is like 21lbs for parents as thats easier to know than kg's his age group are all about 30lbs so it shows.
write back soon