SEPTEMBER 2010
I haven't wrote on the blog in a while as i have being busy and i haven't being able to get to the laptop lol.
Owen's results came back for his batten'es diesase negative, it was such a relief, but at the same time werew still in the same situation and still feels no closer to finding out, sence last writting last the has being quiet alot that has happened, we went back to leeds to see owen's nuroligist, his nuroligist think's it could possably be a mitiondrial disorder, which i have researched and it's like most of the things they thought it was befor, but his nuroligist has said, whatever it is, they'll be no cure little treatment ans life limitting,also waiting for owen's skin and muscle biopsy, i also showed him all my research that i have being doing which he was very inpressed with but, i mentioned alexandra disease, so his brain scans have being sent of to holland now, after owen's operation owen would have nearly had every test going, so his nuroligist said if it came back negative, he would refer us to another nuroligist, also, owen did go downhill 2 months ago very badly, and stopped eating and drinking, and became very dehydrated, so myself and my mum took him to hospital and we stayed in over night, we went back 2 weeks later for him to have a check up and ended up staying in for a week for owen to have a gastro nasel tube (feeding tube through his nose), it has helped owen a little bit but his weight is just still bobbing around from 8kg's-10kg's ( 17.6lbs-22lbs) which is still extreamly underweight for what he age range is, owen still is like a little baby not being able to do anything, and has started having a little trouble breathing, but i do not now if this is because of his condition worsening or his new mediation, owen's now on more med's to help him incase if he's in any pain and discomfort, and to help his muscle tone, but because owen's onso many med's now he can be abit spaced out and in his own little world as i like to say, it does feel like im loosing owen a little and it is getting harder with him all the time, im just trying to make as many memories as possable and camcord and take photo's all the time, owen does seem more alert at the momment and a little happier but we still have are bad days and good.
We are going back to leeds on the 26th september, and staying for a week for owen to have his skin and muscle biopsy and a gastrostamy (feeding tube in his tummy), im so nervouse as owen's having a proper operation which is so scary to think about as him having mri's befor he's just being put to sleep, but them cutting him open scares me to think of how small he is, i'm not looking forward to it what so ever as it's miles away from everyone also, but i no it has to happen and im just going to be happy when it's all over and hopefuly have some results from the operation to see if it is a mitchiondrial disorder,
i'll write back soon
Owen's results came back for his batten'es diesase negative, it was such a relief, but at the same time werew still in the same situation and still feels no closer to finding out, sence last writting last the has being quiet alot that has happened, we went back to leeds to see owen's nuroligist, his nuroligist think's it could possably be a mitiondrial disorder, which i have researched and it's like most of the things they thought it was befor, but his nuroligist has said, whatever it is, they'll be no cure little treatment ans life limitting,also waiting for owen's skin and muscle biopsy, i also showed him all my research that i have being doing which he was very inpressed with but, i mentioned alexandra disease, so his brain scans have being sent of to holland now, after owen's operation owen would have nearly had every test going, so his nuroligist said if it came back negative, he would refer us to another nuroligist, also, owen did go downhill 2 months ago very badly, and stopped eating and drinking, and became very dehydrated, so myself and my mum took him to hospital and we stayed in over night, we went back 2 weeks later for him to have a check up and ended up staying in for a week for owen to have a gastro nasel tube (feeding tube through his nose), it has helped owen a little bit but his weight is just still bobbing around from 8kg's-10kg's ( 17.6lbs-22lbs) which is still extreamly underweight for what he age range is, owen still is like a little baby not being able to do anything, and has started having a little trouble breathing, but i do not now if this is because of his condition worsening or his new mediation, owen's now on more med's to help him incase if he's in any pain and discomfort, and to help his muscle tone, but because owen's onso many med's now he can be abit spaced out and in his own little world as i like to say, it does feel like im loosing owen a little and it is getting harder with him all the time, im just trying to make as many memories as possable and camcord and take photo's all the time, owen does seem more alert at the momment and a little happier but we still have are bad days and good.
We are going back to leeds on the 26th september, and staying for a week for owen to have his skin and muscle biopsy and a gastrostamy (feeding tube in his tummy), im so nervouse as owen's having a proper operation which is so scary to think about as him having mri's befor he's just being put to sleep, but them cutting him open scares me to think of how small he is, i'm not looking forward to it what so ever as it's miles away from everyone also, but i no it has to happen and im just going to be happy when it's all over and hopefuly have some results from the operation to see if it is a mitchiondrial disorder,
i'll write back soon