I'm feeling a little bit dazed today, its been a strange week so far but the only way is up and all that jazz.
i have had a phone call from the hospital due to Logan's clusters of seizures, we were hoping that they were going to say it would just be a tweak in meds, unfortunately not, a whole meds change is in order. need to wait until tomorrow to find out what that will be. we are also keeping our fingers crossed that another hospital visit is not needed.
the twins will be 4 this month! my babies, not so much anymore lol, its been a very long year and hopefully a good birthday party is what we need to turn it around? or is that just wishful thinking?
xxxxxxxxxxxxx
Wednesday 6 June 2012
Monday 4 June 2012
so its been a little while, things have been busy.
they had lots of jubilee celebrations at Jordens school and that was all a bit much for him although he did enjoy it, one example, they had their may day dancing and due to the weather they started a little bit early so ks2 had to do their dancing again, jorden was not OK with this, he did it but i got shouted at at the end, "we only should have done it once and we had to do it twice" he was very cross but his teacher was amazing and talked him through it.
Logan doesn't seem to be doing so well at the moment, he is having loads of absences and the drop attacks have increased back up to 10-15 a day, he was doing so well on these meds, down to about 6 drops a day. it feels alot like 3 steps forward then sprinting back, i just wish i could help him, but as always he smiles and gets on with it, no complaints. we have also noticed an increase in facial twitches. but these things are sent to try us, and try us they do. tonight he fell asleep at 10 past 10, he was exhausted but just wouldn't give in, it makes me so sad that he misses so much from either seizures or just being tired.
Jorden has developed a new "thing" he repeats the last word of each of your sentences, its becoming very annoying, i know that he cant help it but that doesn't stop it getting to us. its so hard to teach him that it annoys people when he just doesn't get that other people have feelings or are affected by his actions
Jeannie has also started being very clingy which is very unlike her, but she follows me around at the moment and wont leave my side.
I'm going to catch some zzzzzzz's while the kids are still asleep, good night xxx
they had lots of jubilee celebrations at Jordens school and that was all a bit much for him although he did enjoy it, one example, they had their may day dancing and due to the weather they started a little bit early so ks2 had to do their dancing again, jorden was not OK with this, he did it but i got shouted at at the end, "we only should have done it once and we had to do it twice" he was very cross but his teacher was amazing and talked him through it.
Logan doesn't seem to be doing so well at the moment, he is having loads of absences and the drop attacks have increased back up to 10-15 a day, he was doing so well on these meds, down to about 6 drops a day. it feels alot like 3 steps forward then sprinting back, i just wish i could help him, but as always he smiles and gets on with it, no complaints. we have also noticed an increase in facial twitches. but these things are sent to try us, and try us they do. tonight he fell asleep at 10 past 10, he was exhausted but just wouldn't give in, it makes me so sad that he misses so much from either seizures or just being tired.
Jorden has developed a new "thing" he repeats the last word of each of your sentences, its becoming very annoying, i know that he cant help it but that doesn't stop it getting to us. its so hard to teach him that it annoys people when he just doesn't get that other people have feelings or are affected by his actions
Jeannie has also started being very clingy which is very unlike her, but she follows me around at the moment and wont leave my side.
I'm going to catch some zzzzzzz's while the kids are still asleep, good night xxx
Monday 28 May 2012
well I've introduced you to everyone so here goes with the actual 'blogging' my aim is to be as honest as i can to give you a real look into our life
today actually started last night when making Jordens lunch box, salad and hummus,nice and easy you'd think....no,
"is that 8 sticks of cucumber?"
"yes Jorden"
"two cherry tomatoes, not 3"
"yes Jorden"
"8 green olives"
"yes jorden"
"and two spoons of humus"
then he disappears, great! i can finish this and then I'm done for night.....no hes back....
"have you cut the pitta into strips not triangles, i don't like triangles"
i nod and say i know. off he goes and into bed. he turns on the telly, he comes down stairs, he asks the same question he asks every night "what time do we need to wake up" i answer "7am" back to bed, then downstairs every 10 Min's for the next two hours. this is good for him, i still don't know why i say he needs to be up at 7 he wakes at 5.30 every morning. but he seems to like that answer.
this morning started with Logan having a drop attack while taking his tablets, thank fully he didn't hurt himself this time but the cup of water went everywhere. it has taken a little while to make the decision about getting him a helmet, I'm not sure why, but he has an appointment on Thursday to get one fitted, then we just have to get him to wear it, that should be interesting. no major incidents all day from any of them, Logan had the usual absences and a few drops but all in all a good day for him. then Jorden returned from his play date, and within minuets of being home he kicked off, i don't even know why, and I'm not sure he did but that went on for about an hour so again, for him that was good, he kicked doors, threw furniture and swore at the top of his voice and once it was over it was like he didn't even know it had happened.
today was a good day, these are the ones i like to focus on as there are few of them. dont get me wrong the bad days play on my mind alot more than they should, but fingers crossed for tomorrow xxxx until next time xxx
today actually started last night when making Jordens lunch box, salad and hummus,nice and easy you'd think....no,
"is that 8 sticks of cucumber?"
"yes Jorden"
"two cherry tomatoes, not 3"
"yes Jorden"
"8 green olives"
"yes jorden"
"and two spoons of humus"
then he disappears, great! i can finish this and then I'm done for night.....no hes back....
"have you cut the pitta into strips not triangles, i don't like triangles"
i nod and say i know. off he goes and into bed. he turns on the telly, he comes down stairs, he asks the same question he asks every night "what time do we need to wake up" i answer "7am" back to bed, then downstairs every 10 Min's for the next two hours. this is good for him, i still don't know why i say he needs to be up at 7 he wakes at 5.30 every morning. but he seems to like that answer.
this morning started with Logan having a drop attack while taking his tablets, thank fully he didn't hurt himself this time but the cup of water went everywhere. it has taken a little while to make the decision about getting him a helmet, I'm not sure why, but he has an appointment on Thursday to get one fitted, then we just have to get him to wear it, that should be interesting. no major incidents all day from any of them, Logan had the usual absences and a few drops but all in all a good day for him. then Jorden returned from his play date, and within minuets of being home he kicked off, i don't even know why, and I'm not sure he did but that went on for about an hour so again, for him that was good, he kicked doors, threw furniture and swore at the top of his voice and once it was over it was like he didn't even know it had happened.
today was a good day, these are the ones i like to focus on as there are few of them. dont get me wrong the bad days play on my mind alot more than they should, but fingers crossed for tomorrow xxxx until next time xxx
Saturday 26 May 2012
The twins, well, we had got married and decided why not? we got two why nots lol
they were born at 38 weeks after induction, i didn't think they were ever going to arrive, i was as big as a house and it was boiling weather but arrive they did,
they were good size, healthy babies and we came home 8 hours after they were born, they developed normally as you'd expect. walking, talking Logan had one odd behaviour that he did from about 5 months, he puts hair on the teat of his bottle, but other than that no concerns.
about 2 weeks before their 3rd birthday Logan had what i thought was a febrile convulsion, i wasn't too scared, as jorden had had them, i phoned the ambulance, we went to hospital, no signs of temperature or illness etc so we came home, the next day another and the same thing, then about 3 days later he had 2 more then he had one that lasted about 4 Min's the next day, we stayed in hospital that time, it was the longest i had been away from the others, all sorts of tests were run, EEGs, MRIs bloods, urine etc he had two more seizures he was diagnosed with epilepsy the day before their 3rd birthday. he continued to have seizures, and more and more types, he has tonic clonic seizures, drop attacks, absences, jerks, twitches in limbs, twitches in face, stiffening, and lip smacking seizures. about two months ago he was diagnosed with myoclonic astatic syndrome, its resistant to medication and so far he has not had a seizure free day in about 6 months. he has lost certain abilities and learning seems to be slowing down, he has lost speech and talks like a baby (not the nearly 4 year old that he is)
he is also displaying unusual behaviours, he licks walls, draws circles and lines, and only circles and lines, he now eats hair as well as adding it to drinks, he spins and flaps his hands and feet, he walks on tip toes and flaps his ear when excited, he makes lines with bricks, in fact anything he can get hold of and has developed and aversion to food, to say this concerns me is an understatement.
other than that, my little man is a star, he never complains, he always has a smile and is generally lovely and a true fighter, none of this gets him down and i am so so proud.
and last but by no means least, Jeannie, she is a real star, with such demanding brothers, she never ever becomes a wall flower, she is funny and sweet and very very cheeky,
she loves people and trying new things, and although small that never stops her, she makes me proud every day xxxxxxx
they were born at 38 weeks after induction, i didn't think they were ever going to arrive, i was as big as a house and it was boiling weather but arrive they did,
they were good size, healthy babies and we came home 8 hours after they were born, they developed normally as you'd expect. walking, talking Logan had one odd behaviour that he did from about 5 months, he puts hair on the teat of his bottle, but other than that no concerns.
about 2 weeks before their 3rd birthday Logan had what i thought was a febrile convulsion, i wasn't too scared, as jorden had had them, i phoned the ambulance, we went to hospital, no signs of temperature or illness etc so we came home, the next day another and the same thing, then about 3 days later he had 2 more then he had one that lasted about 4 Min's the next day, we stayed in hospital that time, it was the longest i had been away from the others, all sorts of tests were run, EEGs, MRIs bloods, urine etc he had two more seizures he was diagnosed with epilepsy the day before their 3rd birthday. he continued to have seizures, and more and more types, he has tonic clonic seizures, drop attacks, absences, jerks, twitches in limbs, twitches in face, stiffening, and lip smacking seizures. about two months ago he was diagnosed with myoclonic astatic syndrome, its resistant to medication and so far he has not had a seizure free day in about 6 months. he has lost certain abilities and learning seems to be slowing down, he has lost speech and talks like a baby (not the nearly 4 year old that he is)
he is also displaying unusual behaviours, he licks walls, draws circles and lines, and only circles and lines, he now eats hair as well as adding it to drinks, he spins and flaps his hands and feet, he walks on tip toes and flaps his ear when excited, he makes lines with bricks, in fact anything he can get hold of and has developed and aversion to food, to say this concerns me is an understatement.
other than that, my little man is a star, he never complains, he always has a smile and is generally lovely and a true fighter, none of this gets him down and i am so so proud.
and last but by no means least, Jeannie, she is a real star, with such demanding brothers, she never ever becomes a wall flower, she is funny and sweet and very very cheeky,
she loves people and trying new things, and although small that never stops her, she makes me proud every day xxxxxxx
an insight into our family and the additional needs within
hi all, I'm not really sure where to start, but i guess an outline of what i will be talking about is a good start. i want to share our experiences of living with special needs in a family, we have 3 beautiful children, 2 of them have additional needs.
my family consists of me, Kelly, 26 my husband Simon also 26, our eldest son, Jorden, nearly 9 and 3 year old boy/girl twins Logan and Jeannie. 2 dogs and a snake.
jorden had high functioning autism and oppositional defiant disorder, Logan has epilepsy (myoclonic astatic syndrome) and is showing signs of learning difficulties and sensory issues. Jeannie is a very happy and perfectly healthy little girl.
between us, friends and other family members, we have created our 'own little world'. its not much but its ours and i feel privileged to be mother to 3 amazing children.
Simon and i met at school, and 'got together' just after, (awwww how sweet, right? lol) when i was 17 i fell pregnant with jorden,he was born 5 days late, all wrinkly and old man like and perfect, when he was about 18 months old i saw something in him i had seen before (i have 3 brothers that all have adhd, then other conditions, ocd, kleptomania, selective mutism, asd etc between them) he would build the most amazing wooden train tracks, set up all the trains and figures and then.............just look at it for hours, he didn't play with it and would get mad if you tried to. he would spin, or run end to end of the house, he didn't talk until just after his 2nd birthday but could say words like sausage, Mississippi, and turtle. he was out of nappies by 16 months, he seemed to just watch the world at a distance but not take part, he didn't want hugs or kisses, he didn't eat or sleep but always had so much energy, so i went to my health visitor, i was told that 'of course you find him difficult your so young' or 'maybe you need a parenting course' i was so confused, i did the right thing, i asked for help, i didn't struggle with him, i never had, we didn't even get a baby sitter until he was two, we did it on our own and yet they didn't believe me, and all the professionals continued not to help me for 7 years, Ive had everything thrown at me as to why he is the was the way he was here's the list,
hes spirited
he hits you because he trusts you
he is frustrated because hes so clever
its character
hes quirky
its because your young
its because you had the twins
its because you have depression/anxiety
it seems harder because your tired
there is more but i feel you may stop reading lol, anyway we continued on with trying to get help, as he got older, he got more and more frustrated, the only real friend he has made is a lad who is also asd. he got more violent, and destructive and most upsetting more distant, one day after he had broken yet another door, refused another meal and kicked off about everything i went back to the doctors and the school and finally, they listened (i was sobbing like a baby and begging for help) and the process had started, and about 6 weeks ago he was diagnosed, in the space of two visits to CAHMS,
Jorden is a lovely little (and i do mean little) boy, who is bright and on the good days funny and kind, yes, he swears and hits out and gets so so mad, but because he doesn't understand the world like we do,
next time......my twins.xx good night and thank you for reading xxx
hi all, I'm not really sure where to start, but i guess an outline of what i will be talking about is a good start. i want to share our experiences of living with special needs in a family, we have 3 beautiful children, 2 of them have additional needs.
my family consists of me, Kelly, 26 my husband Simon also 26, our eldest son, Jorden, nearly 9 and 3 year old boy/girl twins Logan and Jeannie. 2 dogs and a snake.
jorden had high functioning autism and oppositional defiant disorder, Logan has epilepsy (myoclonic astatic syndrome) and is showing signs of learning difficulties and sensory issues. Jeannie is a very happy and perfectly healthy little girl.
between us, friends and other family members, we have created our 'own little world'. its not much but its ours and i feel privileged to be mother to 3 amazing children.
Simon and i met at school, and 'got together' just after, (awwww how sweet, right? lol) when i was 17 i fell pregnant with jorden,he was born 5 days late, all wrinkly and old man like and perfect, when he was about 18 months old i saw something in him i had seen before (i have 3 brothers that all have adhd, then other conditions, ocd, kleptomania, selective mutism, asd etc between them) he would build the most amazing wooden train tracks, set up all the trains and figures and then.............just look at it for hours, he didn't play with it and would get mad if you tried to. he would spin, or run end to end of the house, he didn't talk until just after his 2nd birthday but could say words like sausage, Mississippi, and turtle. he was out of nappies by 16 months, he seemed to just watch the world at a distance but not take part, he didn't want hugs or kisses, he didn't eat or sleep but always had so much energy, so i went to my health visitor, i was told that 'of course you find him difficult your so young' or 'maybe you need a parenting course' i was so confused, i did the right thing, i asked for help, i didn't struggle with him, i never had, we didn't even get a baby sitter until he was two, we did it on our own and yet they didn't believe me, and all the professionals continued not to help me for 7 years, Ive had everything thrown at me as to why he is the was the way he was here's the list,
hes spirited
he hits you because he trusts you
he is frustrated because hes so clever
its character
hes quirky
its because your young
its because you had the twins
its because you have depression/anxiety
it seems harder because your tired
there is more but i feel you may stop reading lol, anyway we continued on with trying to get help, as he got older, he got more and more frustrated, the only real friend he has made is a lad who is also asd. he got more violent, and destructive and most upsetting more distant, one day after he had broken yet another door, refused another meal and kicked off about everything i went back to the doctors and the school and finally, they listened (i was sobbing like a baby and begging for help) and the process had started, and about 6 weeks ago he was diagnosed, in the space of two visits to CAHMS,
Jorden is a lovely little (and i do mean little) boy, who is bright and on the good days funny and kind, yes, he swears and hits out and gets so so mad, but because he doesn't understand the world like we do,
next time......my twins.xx good night and thank you for reading xxx
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