My life with 5 children, all with special needs. 2 with mobility issues, 1 premmie with health issues, a cuddly miracle baby and an eccentric livewire on the spectrum
I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).
Jeremiah has Autism.
Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.
Malachi has hypermobility and wears piedro boots to support his ankles
Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay
Zechariah was born with sepsis and has mild development delay.
Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts
Saturday, 23 March 2013
This week I've been...
...Suffering with a cold and doing Isaac's DLA form. I hate that form, 63 questions where I have to compare Isaac to a "normal" nearly 5 year old and explain the differences. Also a new question wanting details of all appointments for the last 12 months. All done while trying to have a conversation with Malachi about the Octonauts. At least it's done now and I just have to hope that it's renewed at the same rate as before, for longer than a year this time.
Wednesday, 24 October 2012
It's been a while
We've just been plodding along as usual, counting down the days until half term. I phoned school transport and was told that Isaac is not disabled enough to qualify for free school transport but if I send them letters from Simon's employer (saying he is at work at school run time), my GP (saying that I can't walk 9 miles a day pushing Isaac in the wheelchair and carrying Malachi) and Isaac's paediatrician (saying that he can't walk to school) along with copies of the DLA award and blue badge then they would consider it. I'm not sure if it's worth it to be honest. But it's only a few letters and a bit of photocopying says the lady from the school transport office. Yes, added to the other "only's" that I have to do whenever Isaac needs anything. So far I have phoned the paediatrician who is on holiday and made an appointment to see the health visitor which we had to cancel because Isaac was poorly.
In the meantime we found out that breakfast club is only 70p per day so now Simon is taking Jeremiah to that every morning and I am taking Isaac on the days he is in and collecting both of them. So now one of my children is always on time for school. Isaac now has ear defenders for school to try and block out some of the noise. He took them to school for the first time today so hopefully he will have a better morning than he has done.
Isaac was in the local paper this week. A photographer went round to all the reception classes in Somerset and took a photo. So here it is, 15 happy smiling children, and Isaac in a strop.
http://somerset.newsprints.co.uk/view/22486829/st_johns_wellington_recepti_jpg
And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment
http://somerset.newsprints.co.uk/view/16075019/stjohnsreceptionsgwk41_jpg
15th October marked the end of baby loss awareness week and as is tradition we lit Eleanor's candle at 7pm for the international wave of light. I dithered about whether to light 2 candles this year but I couldn't find one or think of an idea to make one that felt right for Elisha so we just lit the one that we usually light.
Isaac finally told me why he didn't like school. Apparantly it's too noisy so he is now the proud owner of some ear defenders. So now he is happy although the teacher is having trouble getting him to take them off when she wants to talk to him. And he is even more unwilling to play with the other children in his class. According to him, Jeremiah is his best friend and he doesn't need anyone else. Not sure what Jeremiah thinks about that!
Malachi is at that in between stage, more toddler than baby now and cruising round the furniture. He has a cold so he is back on his inhaler again. He has also learnt to take apart disposable nappies so he is back in cloth nappies for the forseeable future. He doesn't really have the right shape for cloth nappies as he is very short and rather chubby so finding nappies that fit under his trousers is a challenge. His 9-12 month trousers are a bit long anyway so we can't get away with moving up a size to accomodate his nappy.
In the meantime we found out that breakfast club is only 70p per day so now Simon is taking Jeremiah to that every morning and I am taking Isaac on the days he is in and collecting both of them. So now one of my children is always on time for school. Isaac now has ear defenders for school to try and block out some of the noise. He took them to school for the first time today so hopefully he will have a better morning than he has done.
Isaac was in the local paper this week. A photographer went round to all the reception classes in Somerset and took a photo. So here it is, 15 happy smiling children, and Isaac in a strop.
http://somerset.newsprints.co.uk/view/22486829/st_johns_wellington_recepti_jpg
And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment
http://somerset.newsprints.co.uk/view/16075019/stjohnsreceptionsgwk41_jpg
15th October marked the end of baby loss awareness week and as is tradition we lit Eleanor's candle at 7pm for the international wave of light. I dithered about whether to light 2 candles this year but I couldn't find one or think of an idea to make one that felt right for Elisha so we just lit the one that we usually light.
Isaac finally told me why he didn't like school. Apparantly it's too noisy so he is now the proud owner of some ear defenders. So now he is happy although the teacher is having trouble getting him to take them off when she wants to talk to him. And he is even more unwilling to play with the other children in his class. According to him, Jeremiah is his best friend and he doesn't need anyone else. Not sure what Jeremiah thinks about that!
Malachi is at that in between stage, more toddler than baby now and cruising round the furniture. He has a cold so he is back on his inhaler again. He has also learnt to take apart disposable nappies so he is back in cloth nappies for the forseeable future. He doesn't really have the right shape for cloth nappies as he is very short and rather chubby so finding nappies that fit under his trousers is a challenge. His 9-12 month trousers are a bit long anyway so we can't get away with moving up a size to accomodate his nappy.
Wednesday, 27 June 2012
Update on us
This week we have been ill with colds. Isaac has been even more exhausted than usual. Malachi woke up on monday wheezing and coughing which of course triggered his reflux. Malachi's reflux is caused by his stomach muscles being floppy rather than actual acid and now his weight is ok the drs are reluctant to pump him full of drugs that don't do much anyway. But I thought the gp might be able to do something about his cough/wheeze so Simon took him to the gp and they came home with an inhaler and he had a session with a nebuliser at the dr surgery. The GP thinks he has a virus which triggered an asthma attack. We need to give him the inhaler until the virus goes away and bring him back to the GP or call the out of hours GP if he gets bad again. I'm hoping this will be something that's a one off or he'll grow out of it rather than adding something else to his ever growing list of medical problems but we'll see. I know mild asthma isn't a big thing but Malachi already has 4 not very big things going on.
I've recently discovered how to check how many views each post on the blog gets. Most posts are getting 1-3 views but the one about Eleanors anniversary got 7 I think and the one about Isaac using a wheelchair in tesco got 17. I have no idea why these 2 posts were so much more popular than the others and I'm curious so anyone who read those ones and not the others feel free to comment in the box to satisfy my nosiness. I'm also wondering who the 17 people are who read the wheelchair post.
My idle wonderings are mostly due to being on hold with the tax credit people for nearly 2 hours and not knowing how to use the speaker phone. I'm trying to do my tax credit renewal and I dread to think what my phone bill will be. I've just had to hang up so I can get Jeremiah from school so will have to do the whole thing again later.
I've recently discovered how to check how many views each post on the blog gets. Most posts are getting 1-3 views but the one about Eleanors anniversary got 7 I think and the one about Isaac using a wheelchair in tesco got 17. I have no idea why these 2 posts were so much more popular than the others and I'm curious so anyone who read those ones and not the others feel free to comment in the box to satisfy my nosiness. I'm also wondering who the 17 people are who read the wheelchair post.
My idle wonderings are mostly due to being on hold with the tax credit people for nearly 2 hours and not knowing how to use the speaker phone. I'm trying to do my tax credit renewal and I dread to think what my phone bill will be. I've just had to hang up so I can get Jeremiah from school so will have to do the whole thing again later.
Labels:
asthma,
Eleanor,
illness,
Isaac,
Jeremiah,
Malachi,
post views,
School,
tax credits,
wheelchair
Tuesday, 26 June 2012
Elisha's due date
When I am pregnant I normally try not to focus on my due date. After all only a small number of babies are born on their due date and I in particular tend to have pregnancies that are slighty longer than average. But for the 2 babies that are not with us, the date passes with a sad reminder that there is someone missing who should be being born or having a birthday.
I planned to go to the baby garden at the crematorium today as the chaplain who did Elisha's burial service said the garden is a lot nicer in summer than in february and Elisha's due date seemed like a good day to do it. But we all have colds, Malachi to the extent that he was being nebulised yesterday so we will leave that for another time.
I planned to go to the baby garden at the crematorium today as the chaplain who did Elisha's burial service said the garden is a lot nicer in summer than in february and Elisha's due date seemed like a good day to do it. But we all have colds, Malachi to the extent that he was being nebulised yesterday so we will leave that for another time.
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.
Labels:
Baby groups,
birthday,
Hospital,
illness,
immunisations,
Isaac,
Jeremiah,
Malachi,
occupational therapy,
orthotics,
Park,
Pre-school,
School,
school holidays,
SENCO,
Tired,
wheelchair
Wednesday, 4 April 2012
Isaac and school
I have no idea how to turn this picture round! Isaac is starting school this September. So a few weeks ago we had a school entry plan meeting. Well, Simon went to the meeting. Isaac was sick the night before so I stayed at home with him, Malachi and a mountain of washing. We are now waiting for assessments from OT and wheelchair services. This week we have started potty training which has been difficult because Isaac struggles to get on and off the potty by himself. Not sure how they are going to manage that at school.
We have the long awaited genetics appointment tomorrow. The letter says we will be in there for 2 hours. Jeremiah and Isaac have been bribed with a trip to the park afterwards if they have been good.
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.
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