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Any Cerebral Palsy parents out there :)
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lilesMom
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Hey again :-D
Simon has been having shall fits again.
Prob comgo of being sick and think his meds might need increase
Doh.
Only small room for increase cos he.is nearly at the max
How r ye keeping now xxx
Sorry had a hard time getting time to properly write last few days.
Simon has been having shall fits again.
Prob comgo of being sick and think his meds might need increase
Doh.
Only small room for increase cos he.is nearly at the max
How r ye keeping now xxx
Sorry had a hard time getting time to properly write last few days.
lilesMom
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We go to bog every year.
We call the peat that we bring Home turf :-D
U can buy strips of cut peat,
Its getting scarce now though.
We only get it cos my Bro knows the owner
They are limited in how much they cut
Its very cheap to buy but u need to mind it yourself.
Some years if weather is bad u don't get it even though u pay for it
Cos u can't get it to dry :-D
The bog is nice but hard work
The air up there feels like seaside air for some strange reason :-D
We call the peat that we bring Home turf :-D
U can buy strips of cut peat,
Its getting scarce now though.
We only get it cos my Bro knows the owner
They are limited in how much they cut
Its very cheap to buy but u need to mind it yourself.
Some years if weather is bad u don't get it even though u pay for it
Cos u can't get it to dry :-D
The bog is nice but hard work
The air up there feels like seaside air for some strange reason :-D
lilesMom
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Thought we were bad.
An hour and a half to Sea side here :-D
A lot better than 6 hrs, u would def need to stay a few days.
How's hayley walking going
Does she use a Kay walker at all?
Dis she crawl or skip it.
I know our 2 aren't exact same but just curious :-D xxx
Hope all's well xxx
Munchkin still no where near crawling at 14 month's.
I know it's early but I'd love fir him to be able to get himself around to stuff
He really wants to but just can't
His right arm is his biggest draw back.
Its very weak.
We r working on it though :-D
It has come on lots
An hour and a half to Sea side here :-D
A lot better than 6 hrs, u would def need to stay a few days.
How's hayley walking going
Does she use a Kay walker at all?
Dis she crawl or skip it.
I know our 2 aren't exact same but just curious :-D xxx
Hope all's well xxx
Munchkin still no where near crawling at 14 month's.
I know it's early but I'd love fir him to be able to get himself around to stuff
He really wants to but just can't
His right arm is his biggest draw back.
Its very weak.
We r working on it though :-D
It has come on lots
essie0828
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Oh no. I hope Simon is doing better. It has to be hard on both of you when he's having fits 
Hayley sort of skipped crawling and went straight to knee walking. As soon as she figured out how to get herself into a tall kneel off she went on her knees. Her arms are just now getting strong enough that she is able to support her body weight properly. We do lots of weight bearing exercises like putting her in quadruped (on hands and knees) and making her shift her weight from one arm to the other. Then we do the wheelbarrow where I hold up her feet and she holds her torso up with her arms. Simon probably won't be able to bear much weight with his right so he may need some type of elbow and wrist support. Can he kneel? Try putting him on his knees and making him "stand" up tall on his knees to reach at something. He may find it easier to crawl on knees only, like Hayley did. I swear she's as fast on her knees as most toddlers on their feet. Her walking is getting better and better. She will still try to knee walk when she's unsure about something but she's walking farther and faster holding my hand. She almost ran to my mom yesterday. I had to jog a bit to keep up with her and my mom cried like a baby
Mom hadn't seen her in a couple weeks and it shocked her to see Hayley try to run. 
Her balance is still poor though. I have to stay in arms reach to catch her if she tumbles. Hayley did use a kaye walker for a few months and it helped loads with her transition to her feet. The walker and her braces we're a big help. Her ankles are so weak they buckle in so she has to have that support. Hayley wasnt very mobile at 14 months she was attempting to stand but needed lots of support. She could attempt steps if we held her up but she couldn't handle all her weight. How is Simons right leg strength? Can he support some weight on it? And how involved is his right arm? Is there paralysis or high tone or just generalized weakness? Oh and Hayleys OT and PT recommended joint compression for her. Ithelps with proprioreceptive feedback to the brain. Sorta tells the brain hey im here. Its simply gentle pressure on the joints as if they are baring weight. Like for his right elbow you would grasp his upper arm above the elbow and his arm just below the elbow and gently push both hands tword the joint to compress it slightly. Have your PT demonstrate it, I'm sure it will help. It's helped DD loads. I do her ankles, knees, hips, elbows and wrists every day. Gentle is the key. It can be done wrong and cause injury so It would be best to see it done as well as have the PT do it to you. It really feels rather nice.
Hayley sort of skipped crawling and went straight to knee walking. As soon as she figured out how to get herself into a tall kneel off she went on her knees. Her arms are just now getting strong enough that she is able to support her body weight properly. We do lots of weight bearing exercises like putting her in quadruped (on hands and knees) and making her shift her weight from one arm to the other. Then we do the wheelbarrow where I hold up her feet and she holds her torso up with her arms. Simon probably won't be able to bear much weight with his right so he may need some type of elbow and wrist support. Can he kneel? Try putting him on his knees and making him "stand" up tall on his knees to reach at something. He may find it easier to crawl on knees only, like Hayley did. I swear she's as fast on her knees as most toddlers on their feet. Her walking is getting better and better. She will still try to knee walk when she's unsure about something but she's walking farther and faster holding my hand. She almost ran to my mom yesterday. I had to jog a bit to keep up with her and my mom cried like a baby
Mom hadn't seen her in a couple weeks and it shocked her to see Hayley try to run. Her balance is still poor though. I have to stay in arms reach to catch her if she tumbles. Hayley did use a kaye walker for a few months and it helped loads with her transition to her feet. The walker and her braces we're a big help. Her ankles are so weak they buckle in so she has to have that support. Hayley wasnt very mobile at 14 months she was attempting to stand but needed lots of support. She could attempt steps if we held her up but she couldn't handle all her weight. How is Simons right leg strength? Can he support some weight on it? And how involved is his right arm? Is there paralysis or high tone or just generalized weakness? Oh and Hayleys OT and PT recommended joint compression for her. Ithelps with proprioreceptive feedback to the brain. Sorta tells the brain hey im here. Its simply gentle pressure on the joints as if they are baring weight. Like for his right elbow you would grasp his upper arm above the elbow and his arm just below the elbow and gently push both hands tword the joint to compress it slightly. Have your PT demonstrate it, I'm sure it will help. It's helped DD loads. I do her ankles, knees, hips, elbows and wrists every day. Gentle is the key. It can be done wrong and cause injury so It would be best to see it done as well as have the PT do it to you. It really feels rather nice.
essie0828
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Wow. Is it really that wet in Ireland? How much annual rainfall do y'all get? So do you use turf as an alternative heat source? Most places here use electricity as a primary and then wood, gas or coal as a back up. My grandmother refuses to cook with electricity Says she can't get anything to come out right. I remember cutting wood for her cooking stove when I was a kid. It's a taste that can't be replicated on a gas stove. I miss the old ways sometimes.
Says she can't get anything to come out right. I remember cutting wood for her cooking stove when I was a kid. It's a taste that can't be replicated on a gas stove. I miss the old ways sometimes.
essie0828
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When I was a kid we would cut and haul lots of firewood out of the forests near the oil fields. Trees that they would knock down to build roads they would give to the oil field workers and their families. It was very hard work but we were allowed to sale what we cut for pocket money. Was a good lesson in work for both me and my brother. Plus it was fun bashing around in an old 4x4 truck collecting wood, going hunting and fishing. There's no better food ive ever found than what we brought out of the forests. Wild mushrooms and white tail deer. Mmmmmmm yummy! My grandma says I'm an old soul in a young body. Lol. I always loved to learn the old ways from her. They still raise most of their own food. The stuff you get in the stores here is of no comparison.
lilesMom
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Thanks hon X
Sometimes it feels like progress is so slow but he is,getting stronger
So that's good :-D
That's,great hayley is walking So well :-D
Delighted for ye xxx
Simon likes to kneel
His ankles tend to buckle too
I stand him with his,casts on for practise
He also has stander, he does an hour a day in 2 goes
I must try get him to kneel to get at something
He buckles at waist too so with my help obvs
We do joint compression.
Also get him to take weight of my Hand in his hand
His right hand couldn't take any weight until recently
Now it can take some :-D
Sometimes it feels like progress is so slow but he is,getting stronger
So that's good :-D
That's,great hayley is walking So well :-D
Delighted for ye xxx
Simon likes to kneel
His ankles tend to buckle too
I stand him with his,casts on for practise
He also has stander, he does an hour a day in 2 goes
I must try get him to kneel to get at something
He buckles at waist too so with my help obvs
We do joint compression.
Also get him to take weight of my Hand in his hand
His right hand couldn't take any weight until recently
Now it can take some :-D
lilesMom
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We do get Sun
But also get a fair fwe rainy days :-D
We use oil fir,heating
Use turf/peat to supplement. In our open fire
Electricity to cook
:-D
Not sure why such a mixture
Prob cos it's cheaper way :-D
Ur honeplace sounds lovely.
I've worked since I was 9
I've 40 nieces and nephews and I've minded most of them at some stage.
We never had lots ofmoney so we all worked and bought our own clothes and stuff
I think it's good for a person :-D
But also get a fair fwe rainy days :-D
We use oil fir,heating
Use turf/peat to supplement. In our open fire
Electricity to cook
:-D
Not sure why such a mixture
Prob cos it's cheaper way :-D
Ur honeplace sounds lovely.
I've worked since I was 9
I've 40 nieces and nephews and I've minded most of them at some stage.
We never had lots ofmoney so we all worked and bought our own clothes and stuff
I think it's good for a person :-D
essie0828
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Aww you guys have to be wore out. Sick and lil man having seizures, I hope you both feel better soon.
40 nieces and nephews! Holy cow! That's a huge family. How many brothers and sisters do you have? If you don't mind me asking. I don't have any nieces and nephews
My brother is 38 this yr and I keep telling him to get busy making me some He lives far away though, I'd rarely see them anyway I suppose. We always had to work growing up to buy extra things as well. My father left when I was about 10 and my mom raised us on her own. She had to drive 1.5 hrs one way into the city to work in a factory. She made decent money but we sure wasnt rich and we had to learn to keep up our home while she was away. We rarely saw her because of school and the shifts she worked. We also had to do a sport in school. She made sure we were too busy to get into trouble. Lol. My first taxpaying job was during the summers when I turned 13. That's the earliest kids can work on a farm here, well legally anyway. We worked in tobacco or processing vegetables at a farm facility. I always did odd jobs before then in addition to minding the home place, school, and basketball. I was always put to work with the boys. Lol i was bigger than most of them and worked harder so I never had any trouble. Always liked showing them up. 
I never had any experience with kiddos until I had DD, talk about a shock. Lol. But I found over time the work as a mom is just as hard as putting in a full day in a field. More stressful for sure. And way more rewarding 
40 nieces and nephews! Holy cow! That's a huge family. How many brothers and sisters do you have? If you don't mind me asking. I don't have any nieces and nephews
My brother is 38 this yr and I keep telling him to get busy making me some He lives far away though, I'd rarely see them anyway I suppose. We always had to work growing up to buy extra things as well. My father left when I was about 10 and my mom raised us on her own. She had to drive 1.5 hrs one way into the city to work in a factory. She made decent money but we sure wasnt rich and we had to learn to keep up our home while she was away. We rarely saw her because of school and the shifts she worked. We also had to do a sport in school. She made sure we were too busy to get into trouble. Lol. My first taxpaying job was during the summers when I turned 13. That's the earliest kids can work on a farm here, well legally anyway. We worked in tobacco or processing vegetables at a farm facility. I always did odd jobs before then in addition to minding the home place, school, and basketball. I was always put to work with the boys. Lol i was bigger than most of them and worked harder so I never had any trouble. Always liked showing them up. I never had any experience with kiddos until I had DD, talk about a shock. Lol. But I found over time the work as a mom is just as hard as putting in a full day in a field. More stressful for sure. And way more rewarding
lilesMom
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We r starting to feel better now, thanks x
I've 11 older siblings.
My parents had 6 boys and 6 girls.
I'm the youngest :-D
Plenty bub experience before hand here :-D
But it's different when it's ur own.
All responsibility is on u and u can't hand um back :-D
Yeah my first tax paying job was in a hotel kitchen at 15
I had to pretend to be 16 if asked I was told :-D
We worked so hard for pretty small money.
We did non paid overtime for weddings and stuff.
Totally exploited but I was happy enough at the time
Ur jobs sound hard! X
Well done to ur Mom
Not easy on ur own
I've 11 older siblings.
My parents had 6 boys and 6 girls.
I'm the youngest :-D
Plenty bub experience before hand here :-D
But it's different when it's ur own.
All responsibility is on u and u can't hand um back :-D
Yeah my first tax paying job was in a hotel kitchen at 15
I had to pretend to be 16 if asked I was told :-D
We worked so hard for pretty small money.
We did non paid overtime for weddings and stuff.
Totally exploited but I was happy enough at the time
Ur jobs sound hard! X
Well done to ur Mom
Not easy on ur own
essie0828
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. That's incredible! Your family is huge compared to mine! Im the baby in my family to I had 4 cousins that were raised in the same area. We all grew up like brothers and sisters on the weekends and after school times. Mostly everyone gathering at my grandmas and running wild lol. I have one female cousin and we were pregnant at the same time. Her son is 11 weeks younger than Hayley and is newly diagnosed with epilepsy and developmental delay. Particularly speech delay. He has autistic traits as well but it's too early to tell. It's odd. The only 2 babies born into our family in 10 yrs and they have developmental delays or disabilities. We also had the same OB deliver our kids at the same hospital. It's odd enough that I'm going to go ahead with some genetic testing with Hayley. The CP doc offered it 6 months ago and I declined, upon speaking with another neurologist who assured me she didn't think Hayley had a syndrome or chromosome disorder. She said we would have noticed a regression and not the progression in development Hayley has shown with therapy. But it's a simple blood draw that could give us some new info so I think we're going to have a look. I'm booking her first MRI in late September early October with the genetic screen to be drawn at the same time. Then we see the CP doc with the results Oct 29. It's a long drive to see him and get the tests but they are the best ive found. I've been trying to design a classroom for DD. We really need to practice school. I want to do a multi function therapy/ classroom with handrails and things to help DD be in control of her own movement. Then I want to be able to incorporate 30 min blocks of therapy exercises. Like do 30 mins vocabulary and speech games then move into physical therapy exercises and what not. Ultimately leading up to a goal of 4 hrs a day of mommy home school/ therapy. I've ordered chalkboard paint and we are getting a 3ft x 6ft acrylic mirror cut to mount on one wall with a handrail to run just above it. Kind of like a ballet mirror. I've found a good website for homeschool and therapy items to stock up on. Now I just have to get the room cleaned out and painted, mount the mirror and rail then organize everything. HA! With a toddler underfoot 
Hopefully a little investment will pay off for DD and her lil cousin. He can use the things and I can model the therapy I've learned in the last year to my cousin so she can help her lil man. I think I'm biting off more than i can chew but I need to work out some pent up emotion and what better way? Lol.
I had 4 cousins that were raised in the same area. We all grew up like brothers and sisters on the weekends and after school times. Mostly everyone gathering at my grandmas and running wild lol. I have one female cousin and we were pregnant at the same time. Her son is 11 weeks younger than Hayley and is newly diagnosed with epilepsy and developmental delay. Particularly speech delay. He has autistic traits as well but it's too early to tell. It's odd. The only 2 babies born into our family in 10 yrs and they have developmental delays or disabilities. We also had the same OB deliver our kids at the same hospital. It's odd enough that I'm going to go ahead with some genetic testing with Hayley. The CP doc offered it 6 months ago and I declined, upon speaking with another neurologist who assured me she didn't think Hayley had a syndrome or chromosome disorder. She said we would have noticed a regression and not the progression in development Hayley has shown with therapy. But it's a simple blood draw that could give us some new info so I think we're going to have a look. I'm booking her first MRI in late September early October with the genetic screen to be drawn at the same time. Then we see the CP doc with the results Oct 29. It's a long drive to see him and get the tests but they are the best ive found. I've been trying to design a classroom for DD. We really need to practice school. I want to do a multi function therapy/ classroom with handrails and things to help DD be in control of her own movement. Then I want to be able to incorporate 30 min blocks of therapy exercises. Like do 30 mins vocabulary and speech games then move into physical therapy exercises and what not. Ultimately leading up to a goal of 4 hrs a day of mommy home school/ therapy. I've ordered chalkboard paint and we are getting a 3ft x 6ft acrylic mirror cut to mount on one wall with a handrail to run just above it. Kind of like a ballet mirror. I've found a good website for homeschool and therapy items to stock up on. Now I just have to get the room cleaned out and painted, mount the mirror and rail then organize everything. HA! With a toddler underfoot Hopefully a little investment will pay off for DD and her lil cousin. He can use the things and I can model the therapy I've learned in the last year to my cousin so she can help her lil man. I think I'm biting off more than i can chew but I need to work out some pent up emotion and what better way? Lol.
lilesMom
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Well done hon.
U will do great Xx
At the,mo we do therapy in sitting room
I was only saying,yest,I'm gonna move,everything except his stander yo his room upstairs,and make a therapy room. He is so close to commando crawling
He needs the space.
Are u gonna totally home school her or just for now while young
Simon will be tested for clotting and family factors too
But they said wait till 3 or 4
I agreed to wait but wish I hadn't now
Thinking about ttc in a year or so
But would prefer test done first
U will do great Xx
At the,mo we do therapy in sitting room
I was only saying,yest,I'm gonna move,everything except his stander yo his room upstairs,and make a therapy room. He is so close to commando crawling
He needs the space.
Are u gonna totally home school her or just for now while young
Simon will be tested for clotting and family factors too
But they said wait till 3 or 4
I agreed to wait but wish I hadn't now
Thinking about ttc in a year or so
But would prefer test done first
lilesMom
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Posted cos phone went,weird
I think ur right to test.
It does seem like,a bit of a big coincidence they both hve disabilities x
We had Mri done at 5 day's old :-D
Its good to hve concrete answers xxx
Hope,all's,well x
Goid luck with classroom building :-D Xx
Keep me posted on how it goes
Weird qs
Where does hayley sleep
Simon co sleeps
I tried to get him back into cot a little while ago
But he kept rolling into bars
On his left he can get back
But on his right depending on how he falls
He can get stuck, his hand is,too weak to push himself back out
I think ur right to test.
It does seem like,a bit of a big coincidence they both hve disabilities x
We had Mri done at 5 day's old :-D
Its good to hve concrete answers xxx
Hope,all's,well x
Goid luck with classroom building :-D Xx
Keep me posted on how it goes
Weird qs
Where does hayley sleep
Simon co sleeps
I tried to get him back into cot a little while ago
But he kept rolling into bars
On his left he can get back
But on his right depending on how he falls
He can get stuck, his hand is,too weak to push himself back out
Hi I have a son with Cerebral Palsy aged 28 years. At first the shock was immense. I had placenta previa and bleeding at 32week pregnancy. I had to have a cesarean section and the baby lost oxygen and heat resulting in becoming a special needs child. Therapy started from the begining. Lots of physiotherapy and medical care.
Now he is a big boy on a wheelchair. He can speak and understand. We also started Conductive Therapy Education where he was taught life skills.
I understand the pain and the sorrow but when we persevere the results are very comforting. So please keep on learning about CP and give your child love and therapy.
Now he is a big boy on a wheelchair. He can speak and understand. We also started Conductive Therapy Education where he was taught life skills.
I understand the pain and the sorrow but when we persevere the results are very comforting. So please keep on learning about CP and give your child love and therapy.
