since last time we've had are up's and down's as we do normally, Owens was well for a while but it felt like weeks-months even though it was only about 2 weeks, Owen also got a viral infection were his gastrostomy is, a fungal infection in his groin area and thrush in his mouth, so we had 3 different antibiotics for each problem, since then he hasn't being himself, he's being wanting cuddles, the thrush still hasn't;t gone so he's on his second round of the antibiotics, he's also started getting the same symptoms as last month when he got really ill and ended up in hospital, so I'm keeping an eye on him.
i am so happy as Owens' put some weight on, he did weigh 12.1 a few months ago and know he weighs 17.0 which is fantastic, but it does take it's toll on my back when carrying him, but i am so happy that he's not being sick as much and putting weight on, i was looking back at pictures the other day to earlier this year in January and you could see in the pictures how thin and frail he was, and how ill he was, i am so thankfully to Leeds hospital to finding out what was wrong because if i stayed at hull royal he wouldn't be here today.
this Friday is children in need, and for Owen this year it isn't to wear spotty clothes like last year but to dress silly, so iv'e decided to send him in his buzz light year outfit then atleast he's getting the use out of it.
we had some very bad news today....
we had an appointment at hull royal with his orthopedic for his feet and hips, i was just expecting him to do a check and say how he is, but i was expecting the new's i did.
we went in to see the doctor and Owens' consultant was there as she normally is to, he checked his feet, and hips and then looked at his spine as he has scoliosis, we were then send for an x-ray on his hips to see if his surgery in July had helped and a x-ray on his spine to see how curved it was.
after the x-ray we went back to the doctor who told me his spine is very curved and there may be surgery in the future for that but to just keep using his equipment at the moment, he then quickly looked at Owens arm's as he cannot bed them outward as the muscle have tightened his arms inward to his chest, so he suggested Botox and see how it goes, and if it doesn't work then there will be surgery to leasen the muscles in his arms, i am a little concerned as he has to be put to sleep and the last time he was put to sleep for his hip operation he ended up in high dependency because of his breathing and heart rate due to him being put to sleep.
then he told me what the x-ray for his hips showed, which i was really shocked to hear, he told me that his hips were worse of than when he had the operation to correct them, which means his ball joints in his hips are coming out even more and they could come out in the next 6 months, when he's asleep during his Botox they are going to try and put them back into place but he still will need more surgery for them, there are 2 different things they can do but one will only really work, they can either take some bone from his leg and make the joint were the ball fits bigger so the ball wont be coming out of joint, but because of his spasticity it could just result in what's happened again, or they can fully remove the hip joints, which i know he'll never walk, but when they said that it just makes it sink in, because he wont be able to use his legs, they'll just be like jelly, he'll be able to feel his legs but never move them which every time i think about upsets me ad it also means a 6 hour op which will be his biggest op yet, as they take 3 hours on each legs to do, and if this did happen he will be in intensive care due to his heart rate and breathing, I'm just scared because i know this is the most likely thing to happen that benefits him, until then they will try and put the ball back into joint and if the ball comes out of joint again then he'll be put on the list for the operation, so he'll have his ball out of joint until he's waiting for the operation and just be given medication for the pain which i would not be happy with, i think if they cannot put it back in joint while he's under for his Botox we should consider one of the operation there and then as i don't want it out of joint for weeks to months while he's waiting for the op and in pain.
i am just so shocked with what has to happen and it hasn't suck in properly yet, i knew that as he gets older he'll deteriorate more and he will need operation and i know there are allot more operation to come, i now as he gets older his organs will start to fail and he'll need every treatment passable to keep him alive, but when he told me about this operation it just brings it all back to you and it just feels like he's going downhill so fast at such a young age, it's not fair to put such a young little boy through so much pain, i know it's for the best and to make him comfortable but the question everyone ask's with a disabled child, why him, why does it have to happen to my son.
it's extremely hard and it just seems like it's getting harder so fast and quickly as were i though it would get harder but not so soon.
below is Owen and his auntie Bethany at the park, on Owens' favorite swing