August 2011
It seems weird that so much can happen since last writing on here.
Well we went to see Owens neurologist in Leeds last month, and its just the
same thing again really, he still thinks its mitochondrial disease but he cant
say it is as the tests have being negative, he also said he's the best as he's
ever seen Owen, Owen does now have scoliosis, and may need it correcting in the
future but he's leaving it for the minute, Owen does need the operation to stop
him being sick, and he will need a operation similar to the one he had on his
groin were they released his tendons but he will need it on his arms, just were
you bend the arms on the inside were the elbow is, as Owen can no longer move
his arms and they are stuck in the same postilion, they have slowly being
getting tighter, but there to the point were they are stuck and an operation is
the only solution, he also doesn't want to do anymore tests at the moment as
he's being through allot in the past year as it is, so he doesn't want to do
anymore Ct scan or MRI scan until next year, and he's still got operations
coming up and also just the normal things like his eye tests e.c.t. it is hard
to no Owen has to go through all this and i now no what's going to happen and
what to expect, which isn't something someone should have to go through, but it
does happen, but i have to always think positive, because if Owen didn't have
any operations or treatments or anything to help him he wouldn't be here now,
everything that happens to him is to help him and make his life easier, which is
all we can do, there's no cure for what Owen has, so the only thing that can
happen, is treatment e.g. medications, physiotherapy, occupational therapy, and
the normal appointment, and the ongoing operations.
Owen and myself also had
are holidays, Owens went to his dads at weekends and respite during the week
days and i went to Spain, from the 11 august to the 28th august, but i have to
say if i go on holiday in the future, i wont go away for so long, because i
missed him to much, i don't think it matters how long your away though i would
miss him just the same, but i was able to atleast have a break and was reassured
Owen was ok as i left him in safe hands, i had a really nice time, and got to go
through Paris on the way home, Owen had a nice little break to, but when he went
to martin house, the doctor decided it would be best for Owens medication to be
increased as his muscle spasms were constant, which i new already.
getting
back and seeing Owen was the weirdest thing ever, when i saw him in his car seat
it felt really odd, like he had changed and grown up a little, so i felt a
little sad that i thought i had missed him growing up, (if that makes since),
he's being wanting lots of cuddles and lots of songs from mummy to sing to him,
and in return i have had loads of proper little giggles of Owen, which before he
only used to do rarely, and he seems allot more alert, so im putting it down to
his increased mediation.
were getting the new car mid September, so it'll be
good to finally have the room in the car for all Owens equipment, Owens still
screaming in the car though, every car journey, so i am putting it down his car
seat, as when his dad had him, he used his old seat just a normal basic seat and
he was fine, Owen was back at hospital yesterday, for him to get his feet
measured for some new splints, as his feet have finally grown a little.
Some fantastic news also when i got home. the letter from make a wish
foundation, Owen got his first wish DISNEY LAND FLORIDA, i am so happy, because
this will be Owen first and last holiday abroad, as travel insurance for Owen
will be in it's thousands, and i no he's only 3 and a half, but i want him to go
now as if i tryed in a few years time, it could be to late or he may be to weak
to go, so his neurologist has said its fine for him to fly.
so were waiting
as there ringing back next week to discuss it all with me.
Well we went to see Owens neurologist in Leeds last month, and its just the
same thing again really, he still thinks its mitochondrial disease but he cant
say it is as the tests have being negative, he also said he's the best as he's
ever seen Owen, Owen does now have scoliosis, and may need it correcting in the
future but he's leaving it for the minute, Owen does need the operation to stop
him being sick, and he will need a operation similar to the one he had on his
groin were they released his tendons but he will need it on his arms, just were
you bend the arms on the inside were the elbow is, as Owen can no longer move
his arms and they are stuck in the same postilion, they have slowly being
getting tighter, but there to the point were they are stuck and an operation is
the only solution, he also doesn't want to do anymore tests at the moment as
he's being through allot in the past year as it is, so he doesn't want to do
anymore Ct scan or MRI scan until next year, and he's still got operations
coming up and also just the normal things like his eye tests e.c.t. it is hard
to no Owen has to go through all this and i now no what's going to happen and
what to expect, which isn't something someone should have to go through, but it
does happen, but i have to always think positive, because if Owen didn't have
any operations or treatments or anything to help him he wouldn't be here now,
everything that happens to him is to help him and make his life easier, which is
all we can do, there's no cure for what Owen has, so the only thing that can
happen, is treatment e.g. medications, physiotherapy, occupational therapy, and
the normal appointment, and the ongoing operations.
Owen and myself also had
are holidays, Owens went to his dads at weekends and respite during the week
days and i went to Spain, from the 11 august to the 28th august, but i have to
say if i go on holiday in the future, i wont go away for so long, because i
missed him to much, i don't think it matters how long your away though i would
miss him just the same, but i was able to atleast have a break and was reassured
Owen was ok as i left him in safe hands, i had a really nice time, and got to go
through Paris on the way home, Owen had a nice little break to, but when he went
to martin house, the doctor decided it would be best for Owens medication to be
increased as his muscle spasms were constant, which i new already.
getting
back and seeing Owen was the weirdest thing ever, when i saw him in his car seat
it felt really odd, like he had changed and grown up a little, so i felt a
little sad that i thought i had missed him growing up, (if that makes since),
he's being wanting lots of cuddles and lots of songs from mummy to sing to him,
and in return i have had loads of proper little giggles of Owen, which before he
only used to do rarely, and he seems allot more alert, so im putting it down to
his increased mediation.
were getting the new car mid September, so it'll be
good to finally have the room in the car for all Owens equipment, Owens still
screaming in the car though, every car journey, so i am putting it down his car
seat, as when his dad had him, he used his old seat just a normal basic seat and
he was fine, Owen was back at hospital yesterday, for him to get his feet
measured for some new splints, as his feet have finally grown a little.
Some fantastic news also when i got home. the letter from make a wish
foundation, Owen got his first wish DISNEY LAND FLORIDA, i am so happy, because
this will be Owen first and last holiday abroad, as travel insurance for Owen
will be in it's thousands, and i no he's only 3 and a half, but i want him to go
now as if i tryed in a few years time, it could be to late or he may be to weak
to go, so his neurologist has said its fine for him to fly.
so were waiting
as there ringing back next week to discuss it all with me.