3 weeks of the autumn term gone, another 5 to go until 1/2 term. Isaac has been doing 9-1 this tuesday and thursday and will do the same next week. Then on thursday the senco, the teacher and I will discuss what to do next. Next week the 2 halves of the class will come together to do 9-1 then the week after those who are ready will go full time.
When I pick up Isaac at 1:00 I have the opportunity to be a fly on the wall at playtime. Jeremiah seems to spend a lot of time running round in circles and Isaac seems to spend a lot of time sat on the playground wall being hugged by at least one of the older girls.
Nothing else to report apart from that Malachi has a cold which has upset his reflux. So I'm spending most mornings washing bedding and scrubbing the cot.
Showing posts with label Tired. Show all posts
Showing posts with label Tired. Show all posts
Saturday, 22 September 2012
Saturday, 8 September 2012
The weekend
This week I feel like I've spent most of my time at the bus stop. In between bus journeys we have been very busy. The 6-9 month clothes have gone up in the loft and the 9-12 month clothes have come down. We cheered on St Andrews house at sports day. Isaac was pushed to his limits at school. Isaac's steps were installed by the doors to the reception class. Cars 2 was watched several times by 3 very tired boys. We went to the after school thing at the church where someone praised my boys behaviour (proud mummy moment). Jeremiah took part in the year 2 sprint and the infant school bat and beanbag races (another proud mummy moment). Malachi clapped when Jeremiah finished his race.
And now it's the weekend and I have mostly been doing housework and recharging my batteries ready for another busy week. I have been struggling with carrying Malachi while pushing Isaac in his wheelchair. The ergo is a lot better than anything else I've tried but however I do it a 19 month old is heavy. I've managed to get him on my back once and that was better but I haven't been able to do that since. Malachi likes to fling himself backwards at the crucial moment which makes me nervous. I have discovered a babywearing group fairly near us so I will try and get to the next meeting.
And now it's the weekend and I have mostly been doing housework and recharging my batteries ready for another busy week. I have been struggling with carrying Malachi while pushing Isaac in his wheelchair. The ergo is a lot better than anything else I've tried but however I do it a 19 month old is heavy. I've managed to get him on my back once and that was better but I haven't been able to do that since. Malachi likes to fling himself backwards at the crucial moment which makes me nervous. I have discovered a babywearing group fairly near us so I will try and get to the next meeting.
Isaac on his first day at school
Wednesday, 18 July 2012
Letter from a 9 year old with Ehlers Danlos Syndrome
This letter is from a 9 year old who has Ehlers Danlos Syndrome and is trying to raise awareness. Ehlers Danlos Syndrome is what me Simon, Jeremiah, Isaac and Malachi have and most likely Eleanor and Elisha as well. It is the reason why Isaac uses a wheelchair and Malachi has reflux. Maddison explains Ehlers Danlos Syndrome a lot better than me so I will hand over to her.
Dear World,
My name is Maddison Parker, I am 9 years old and I have Ehlers Danlos Syndrome. I am wanting the world to understand Ehlers Danlos Syndrome so am sending this email out. I have some questions for you all! I would like to know why no one cares about Ehlers Danlos Syndrome? May was Ehlers Danlos Awareness Month and no-one really cared because I didnt hear anything about it anywhere! My grandma even sent a letter to A current Affair telling them it was the awareness month and again, nothing happened, they didnt even reply!!
A week in my life is full of pain. I'm constantly heating up my heat pack, and needing pain medicine. At school i cant finish my school work because Im in so much pain and all my joints dislocate. In case you dont know Ehlers Danlos syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I cant play with all my friends because when I run around my joints pop out and it hurts and I get really tired. It doesnt just make my joints pop out but it effects my balance, my eyes, my heart, tummy, skin and even my blood. It is a really painful thing to have. It's not fair!
Im in and out of hospital and my wheelchair. I dislocate my joints every day and have pain all day every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.
Im sick and tired of everyone saying there is nothing wrong with me because I look fine and that its all in my head. For lots of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the childrens hospital and the sunshine hospital. Even some of the doctors say "You again!" So I want to know WHY arent you trying to raise money to help cure my Ehlers Danlos Syndrome???? The doctors dont know much about it and cant really help me.
If I could change one thing about the world it would be the way people understand Ehlers Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don't I matter??
From Maddison Parker
Dear World,
My name is Maddison Parker, I am 9 years old and I have Ehlers Danlos Syndrome. I am wanting the world to understand Ehlers Danlos Syndrome so am sending this email out. I have some questions for you all! I would like to know why no one cares about Ehlers Danlos Syndrome? May was Ehlers Danlos Awareness Month and no-one really cared because I didnt hear anything about it anywhere! My grandma even sent a letter to A current Affair telling them it was the awareness month and again, nothing happened, they didnt even reply!!
A week in my life is full of pain. I'm constantly heating up my heat pack, and needing pain medicine. At school i cant finish my school work because Im in so much pain and all my joints dislocate. In case you dont know Ehlers Danlos syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I cant play with all my friends because when I run around my joints pop out and it hurts and I get really tired. It doesnt just make my joints pop out but it effects my balance, my eyes, my heart, tummy, skin and even my blood. It is a really painful thing to have. It's not fair!
Im in and out of hospital and my wheelchair. I dislocate my joints every day and have pain all day every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.
Im sick and tired of everyone saying there is nothing wrong with me because I look fine and that its all in my head. For lots of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the childrens hospital and the sunshine hospital. Even some of the doctors say "You again!" So I want to know WHY arent you trying to raise money to help cure my Ehlers Danlos Syndrome???? The doctors dont know much about it and cant really help me.
If I could change one thing about the world it would be the way people understand Ehlers Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don't I matter??
From Maddison Parker
Wednesday, 11 July 2012
Dancing with myself
Today has been one of those days. It started with Isaac not wanting to wake up which meant I had to dress him. He has fallen off the toilet today and generally been unsteady on his feet. So today I've been trying to do bits of housework in between helping Isaac with everything. Of course Malachi wasn’t keen on Isaac having all the attention so he was shouting as well. Nothing terrible happened but it was one of those days where I feel like I’m running round in circles. So I did the only thing you can do in this situation. Jeremiah, Isaac and Malachi had a quick early tea and for the last ½ an hour we have had my glee dvd on and we have been watching all the songs from the special features. Malachi is in the jumperoo and the older boys are dancing. Well, Isaac is on the floor mostly but at least he is happy. Jeremiah is attempting to breakdance which is absolutely hilarious.
No news from the SENCO today. But the class list for next year will be posted either tomorrow or friday. I don't mind what class Jeremiah is in but he is desperate to know one way or another.
Tuesday, 5 June 2012
Update on us
Thought I'd better do an update post as a lot has happened in the last few weeks. On 11th May I got a phone call from exeter mobility centre asking me why we hadn't come to Isaac's appointment. Somehow the letter had got lost in the post, argh. On 12th May we had my birthday celebrations, going to a new park, cocktails in the garden and out for dinner. Then we all came down with the hideous tummy bug that was going round the school so I spent my 30th birthday cleaning up puke.
Last week was the week of appointments. On Monday we went to the GP who referred Isaac to the orthapeadic surgeon to try and sort out what shoes he can wear for PE. Then we went to orthotics at the hospital where they said that Isaac's feet haven't grown so he doesn't need new piedro boots. On tuesday Isaac did preschool in the morning while Malachi and I did breastfeeding group. The health visitor had a good moan at me for postponing Isaac and Malachi's immunisations for later in the week. In the afternoon we went to school to meet the occupational therapist, her student, the lady from the PIMS team and the school senco. The occupational therapist was lovely and actually asked Isaac what he wanted which was nice. She went round measuring everything and has ordered steps, grab rails and a toilet seat.
On Wednesday morning Isaac had his school induction meeting. We heard the same speech from the head and the teacher that we heard when Jeremiah started and we were shown a short video of what I thought would be the current reception class but turned out to be Jeremiah's year group. On Wednesday afternoon Isaac slept for 3 hours, absolutely shattered. On thursday Isaac was meant to be at preschool but at 11:30 they phoned me up and asked me to collect him as he had fallen asleep. So glad I postponed the immunisations. On Friday we had a letter from exter mobility centre and Isaac's new appointment is on 11th June. Isaac and I have already picked the wheelchair we would like. I really hope they agree and I'm worried they will offer us a special needs buggy or nothing at all. Isaac hates being "babied" because of his disabilities so he won't be happy if he has to go to school in a buggy. If we get nothing I won't be able to leave the house once he grows out of the buggy we have.
This week is half term. A chance to recharge our batteries and get some housework done before another busy week next week.
Last week was the week of appointments. On Monday we went to the GP who referred Isaac to the orthapeadic surgeon to try and sort out what shoes he can wear for PE. Then we went to orthotics at the hospital where they said that Isaac's feet haven't grown so he doesn't need new piedro boots. On tuesday Isaac did preschool in the morning while Malachi and I did breastfeeding group. The health visitor had a good moan at me for postponing Isaac and Malachi's immunisations for later in the week. In the afternoon we went to school to meet the occupational therapist, her student, the lady from the PIMS team and the school senco. The occupational therapist was lovely and actually asked Isaac what he wanted which was nice. She went round measuring everything and has ordered steps, grab rails and a toilet seat.
On Wednesday morning Isaac had his school induction meeting. We heard the same speech from the head and the teacher that we heard when Jeremiah started and we were shown a short video of what I thought would be the current reception class but turned out to be Jeremiah's year group. On Wednesday afternoon Isaac slept for 3 hours, absolutely shattered. On thursday Isaac was meant to be at preschool but at 11:30 they phoned me up and asked me to collect him as he had fallen asleep. So glad I postponed the immunisations. On Friday we had a letter from exter mobility centre and Isaac's new appointment is on 11th June. Isaac and I have already picked the wheelchair we would like. I really hope they agree and I'm worried they will offer us a special needs buggy or nothing at all. Isaac hates being "babied" because of his disabilities so he won't be happy if he has to go to school in a buggy. If we get nothing I won't be able to leave the house once he grows out of the buggy we have.
This week is half term. A chance to recharge our batteries and get some housework done before another busy week next week.
Tuesday, 8 May 2012
All about Isaac
As Isaac gets ready to start school things seem to be all about him at the moment. We seem to have more and more appointments and different proffessionals are getting involved. We are still waiting rather impatiently for an appointment with wheelchair services. Isaac's friend has just got a wheelchair and Isaac had a go in it last week. It was so much easier to push than the buggy and Isaac could wheel himself a little way too.
Today I talked to the SENCO at school about Isaac going part time. He is going to start off going Monday, Wednesday and Friday mornings. I took him to the disabled toilet at school today but he couldn't manage it himself. He keeps saying it's his toilet and he wants to visit it every day. He is doing really well with the potty training and has been dry for 4 days in a row. It's a lot harder than when he was in nappies but I'm so proud of him for managing it. He is at the stage when he wants to try out every toilet when we are out so the time in between picking him up from preschool and picking Jeremiah up from school is quickly filled up with a toilet tour of Wellington! Isaac has been going to preschool all day on Thursdays as well as Tuesday mornings since Easter. He is enjoying it but he is absolutely shattered afterwards.
I will try and blog about Jeremiah and Malachi next time.
Today I talked to the SENCO at school about Isaac going part time. He is going to start off going Monday, Wednesday and Friday mornings. I took him to the disabled toilet at school today but he couldn't manage it himself. He keeps saying it's his toilet and he wants to visit it every day. He is doing really well with the potty training and has been dry for 4 days in a row. It's a lot harder than when he was in nappies but I'm so proud of him for managing it. He is at the stage when he wants to try out every toilet when we are out so the time in between picking him up from preschool and picking Jeremiah up from school is quickly filled up with a toilet tour of Wellington! Isaac has been going to preschool all day on Thursdays as well as Tuesday mornings since Easter. He is enjoying it but he is absolutely shattered afterwards.
I will try and blog about Jeremiah and Malachi next time.
Tuesday, 28 February 2012
busy days
Yesterday Isaac had his feet measured and he needs the next size up piedro boots. I had a scary conversation with someone who's child has hypermobility about as severely as Isaac. Her son dislocates his joints which Isaac doesn't and I thought he wouldn't do but she told me that her son wasn't dislocating at Isaac's age, he started at 5 years old. There are times like this when I feel scared for his future. Then today a lady came to the breastfeeding group with her 2nd baby who had been going when Isaac was tiny. She asked how Isaac was, if he still had his feeding tube? He has come a long way in his short life.
Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool. I stayed and watched. There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home. He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.
Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day. I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her. We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again. This time I will keep him on the increased dose for longer. For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.
Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool. I stayed and watched. There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home. He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.
Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day. I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her. We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again. This time I will keep him on the increased dose for longer. For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.
Sunday, 26 February 2012
Long time, no blog
This week we have been walking to school. Every time we do this I'm amazed at the amount of money we don't save. The buggy has needed 2 new inner tubes which cost £20. Tomorrow Isaac has a hospital appointment which will cost us £9 in bus fares. The weekly tickets would have cost us £33 pounds so we have saved a grand total of £4. Oh dear. Hopefully we will soon be fitter as a result, at the moment I think we are all just tired.
On Tuesday someone is coming to observe Isaac in pre-school to decide how much help he will get at school. I'm going to stay while she does it so that I can tell her if he is having a good day or not. I'm looking forward to seeing him at preschool as normally I just drop him off and go.
The weather has been amazing for February and Jeremiah and Isaac have been playing in the garden. I will have to get some suncream!
Malachi has learnt to commando crawl and wave. Simon got the 6-9 month clothes down from the loft and it's been lovely dressing him in all his "new" outfits.
On Tuesday someone is coming to observe Isaac in pre-school to decide how much help he will get at school. I'm going to stay while she does it so that I can tell her if he is having a good day or not. I'm looking forward to seeing him at preschool as normally I just drop him off and go.
The weather has been amazing for February and Jeremiah and Isaac have been playing in the garden. I will have to get some suncream!
Malachi has learnt to commando crawl and wave. Simon got the 6-9 month clothes down from the loft and it's been lovely dressing him in all his "new" outfits.
Tuesday, 29 November 2011
End of November
I've been quite lax with my blog this month. I've had a cold, Jeremiah and Isaac have had tummy bugs and now Isaac has a cough. He has been coughing so much at night he is being sick so I'm spending rather more of the night than I'd like changing sheets. Meanwhile Jeremiah has woken up, offered helpful suggestions and told me how many days it is until Christmas. I am so so tired.
By some miracle we made it to school on time today and Jeremiah is off school tomorrow because the teachers are striking. Only 2.5 weeks until the school holidays, I can't wait. Hopefully we will be able to go to some baby groups before then. It feels like ages since we went to one and I think Malachi is missing his little friends.
By some miracle we made it to school on time today and Jeremiah is off school tomorrow because the teachers are striking. Only 2.5 weeks until the school holidays, I can't wait. Hopefully we will be able to go to some baby groups before then. It feels like ages since we went to one and I think Malachi is missing his little friends.
Monday, 12 September 2011
Malachi - 8 months
Malachi is 8 months old today. This weekend he has done a bit of rolling and he's getting quite good at it. Today has been a manic day. Took Isaac to TOG (Taunton Opportunity Group) today. Malachi and I went to new parents group and then we all went to the drop in group this afternoon. Isaac slept 13 hours last night and he was still tired this morning.
I've been promoting the time to chat group this summer and so has Mel, the portage worker. Today 3 mums said they'd be there which is an exciting yet terrifying thought. Mel and I have been meeting up for a year now trying to run a group that nobody else goes to and while it's exciting that we might get some other people coming, I'm worried that they'll come and not like it. I'll let you know how it goes tomorrow.
I've been promoting the time to chat group this summer and so has Mel, the portage worker. Today 3 mums said they'd be there which is an exciting yet terrifying thought. Mel and I have been meeting up for a year now trying to run a group that nobody else goes to and while it's exciting that we might get some other people coming, I'm worried that they'll come and not like it. I'll let you know how it goes tomorrow.
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