Summer holidays

Finally whatever happened to stop me uploading photos has resolved itself.  We're now halfway through the summer holidays.  Jeremiah is on his way home from Scotland after climbing ben nevis.  Isaac is mostly resting and refuelling ready to start year 3 in September.  Malachi is excited about starting school.  Ezekiel has had 5 lumbar punctures and 3 MRI scans so far and still no further forward than we were at the beginning.  Zechariah is crawling and generally getting into everything.

Still here, still plodding along

I haven't had much time to blog lately.  5 boys keep me busy and with Simon working from home a lot lately I'm struggling to get on the computer.  Jeremiah is much the same, still interested in weird facts and lego.  Isaac has lost his first tooth, making more friends at school and desperately trying to keep up with them.  Malachi is now fully toilet trained in the day and still causing chaos.  Ezekiel is his usual happy self.  Zechariah is just plodding along, meeting milestones a bit later than average but getting there in the end.

Back to school

This year the summer holidays have mostly involved activities at home.  We usually go out a lot in the school holidays but going out with 4 children, a wheelchair and a double buggy is challenging to say the least. 

I decided to take a book or film each week and do activities around the theme.  I also wanted to make sure we did some messy play, to try and encourage Isaac.  I think we did well, considering we have a small baby.

Malachi making paper dolls in hairspray week

 

Jeremiah in the secret passage during famous five week

 

Isaac making snow angels during the lion, the witch and the wardrobe week

 

Playing with spaghetti during harry potter week

 

We even made it on holiday to Wales, where Jeremiah climbed Snowdon

 

Isaac wheeled himself round Cardiff.  Malachi kept trying to make breaks for freedom and Ezekiel mostly slept and fed.

 

So now the older boys are back at school.  We are having our bathroom refitted so mostly I am keeping Malachi out of the way of the builders.  I'm also focussing more on Malachi-centred activities rather than helping him join in with whatever I have planned with the older boys in mind.

 

Ezekiel's needs are still mostly milk, cuddles and sleep.  His weight gain has slowed down so we have been trying various things to help that.  Weigh in tomorrow and then hip scan on Thursday.





 

 

 

 

March already

So it's already March and I haven't blogged since the end of January.  4 weeks until Easter holidays (yes, I'm counting) and things are ticking over with a few big changes too.  Jeremiah has his first wobbly tooth.  Isaac has started full time school this week.  Malachi has moved from the cot to a bed which means a lot less sleep is being had by me.  It's a good job he's cute or the "hello mummy" at various intervals through the night would be a lot more irritating!  Got 6 hours sleep last night which was a vast improvement.  I won't even mention what the other nights were like!  Not much else has been happening, just little things like Isaac going into school happy today.  He is also on antihistamines while the GP tries to work out whether is red and swollen legs and feet are an eds thing or an allergy.

The difference between full blown EDS and otherwise symptomless hypermobility was demonstrated yesterday.  Jeremiah leant forward and put his head between his legs.  Don't ask me why, I think it's just one of those things that children do that make no sense at all.  Isaac tried to do the same thing, went too far, lost his balance and hit his head on the pavement, oh dear.  Hopefully he's learnt that it's not always a good idea to copy his brother.

Long time no blog

Just realised I haven't blogged in over a month.  So here is a summary of what we've been up to.

Isaac did his nativity play at the church with the other children in the reception class.  Much to my surprise (and the teacher's too, I think) he went on the stage with the other shepherds with a huge grin on his face and a lot of waving in my direction.  Timmy the sheep came too, which helped I think.

 

 

We remembered Elisha, born to soon a year before and Eleanor who would have been 7 at around that time too.

 

Christmas came and went with the usual excitement and chocolate consumption.

 

Followed quickly by Malachi's 2nd birthday.  Two years have gone by so quickly.

 

Then the snow.  Jeremiah and Malachi loved it, Isaac wasn't too sure.  Malachi, always wanting to join in with the big boys, insisted on going out in the snow and walking round the garden holding my hands.

 



 

This little one is just starting to walk.  Plodding along with an intense look of concentration on his faceand then falling on his bottom after a few steps.  He is getting there, slowly but surely.

An update post

Just realised I haven't posted in nearly 3 weeks.  Isaac's school entry review went ok.  One of those meetings where we all agree nothing has changed so we carry on as we are and review again next year.  Malachi was very good although he was eyeing up the headmaster's fruit bowl and saying "nana" every so often.  Apparantly Jeremiah has been telling Isaac's teachers how to look after Isaac when he thinks they are doing it wrong.  I think this is sweet but I appreciate it must be driving Isaac's teachers crazy.

Children in need day came around again and we went to ASDA after school as usual so that Jeremiah could hug the man dressed up in a pudsey suit.  Isaac wasn't too keen though which led to the following conversation:

Isaac: I could be on children in need
Jeremiah: No you couldn't
Isaac: Yes I could, I've got a wheelchair
Jeremiah: Yes, but you're scared of Pudsey

I think Jeremiah had a point!

Yesterday Isaac, Malachi and I had our flu jabs.  Isaac went first as usual.  It was the usual trauma of  me picking him up and the nurse jabbing him ASAP.  Not very dignified but better than being in hospital with flu (again).  Oddly enough it was Malachi who calmed him down by not making a sound when he had his done, taking us all by surprise and stopping Isaac in his tracks.  Then I had mine and off we went to buy cake as is tradition after an appointment where needles are involved.

parents evening and physio

So parents evening was last night and both boys are doing well.  Jeremiah's teacher had an appointment system and Isaac's was a drop in so Simon went to Jeremiah's and I went to Isaac's with all 3 children in tow.  Jeremiah asked Isaac's teachers how he was getting on which was super cute.  Isaac's teacher said that underneath the grumpy exterior there is a happy, bright little boy trying to get out.  Jeremiah's teacher said he can read more words than anyone else in his year.

Malachi's physio appointment was this morning.  He's doing well and getting close to walking.  He can walk pushing along Isaac's toy fire engine for a few steps but he prefers to sit on it.  I asked about getting him a kaye walker but he is too short for one.

The physio said that Isaac is showing signs of arthritis so he needs a blood test for that when we see Nicola next month.  I knew he was likely to get it earlier than normal because of his hypermobility but I didn't think it would be this early.  In the meantime I'm trying not to panic (easier said than done).

Back to school again

We spent half term doing mostly nothing apart from a trip to puxton park.

So now Jeremiah and Isaac are back at school.  Parents evening tonight, physio with Malachi tomorrow.  Only 7 weeks until the Christmas holidays and yes I am counting!

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.

A conversation with school transport services

The worst part of having a child with EDS is the red tape. I tried for the third time to get Isaac school transport today and it went like this:

No, we can't help you, phone this number, phone that number, then phone another number. No, we don't have any record of you applying before. At his age he should be able to walk 2 miles to school and you are only 1.5 miles away. Well, you could try filling in this long form and submit medical evidence why you need school transport but I doubt you'll get it, he's not disabled enough. Or you could try phoning yet another number tomorrow. He's a wheelchair user, how can he not qualify for school transport. Bangs head against the wall.

One happy Isaac

For the second time this term Isaac went into school happy.  I finally got out of him what has been bothering him at school.  Apparantly it is too loud so I had a chat with the TA and the SENCO and they are going to try and get some ear defenders for him.

In other news, the road is being resurfaced.  Which for us means more delays with the buses.  We were late for school again this morning and I was nearly late picking Jeremiah up.  I am seriously considering learning to drive as I'm so fed up with being late all the time because of the buses.  Also when Isaac turns 5 I will be spending £68 a week on bus fares.

Tomorrow I will be having the day off.  Dropping Jeremiah off at school and then coming home and catching up with various jobs until it's time to pick him up again.

Another week gone

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.

Children's television when I was young

Jeremiah wanted to know what I watched on television when I was young.  After a bit of searching on youtube we discovered some videos of old children's television programmes.  Jeremiah and Isaac loved fun house and banana man.  I was trying to explain to Jeremiah that when I watched fun house we didn't have soft play but he gave me that look that makes me feel like a dinosoar.

Malachi has got a cold and he is really wheezy again.  He isn't as bad as last time, probably because I started him on his inhaler as soon as the wheezing started rather than dithering and then waiting for a GP appointment.  I think he will probably get an asthma diagnosis at some point.  Partly because Ehlers Danlos Syndrome affects his core muscles and partly because Simon and I both have it.

Isaac will be going to school 9-1 this week and next week.  Hopefully he will manage the extra hour ok.  He has been very tired but he is determined to walk as much as possible.  We take the wheelchair with us everywhere just in case and on most journeys he will get in for a rest at some point.

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.

Isaac on his first day at school

Orthotics, a party, EDS awareness and going back to school

It's been a very busy 2 days for us.  Yesterday Isaac had his orthotics appointment.  We were late because the bus driver refused to let us on because there was a buggy in the wheelchair space.  Don't get me started on that.  The orthopaedic surgeon has decided that piedro boots aren't giving him enough support so he needs inserts in his piedro boots.  When he does pe at school the teaching assistant will take the inserts out of his piedro boots and put them in his plimsoles.

On our way out Jeremiah noticed a sign about a party and free cake.  It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on.  A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story.  http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.

Maddy's campaign has spread further.  She won the Pride of Australia award and appeared on television as well.  http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease.  She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.

Today both the big boys went to school.  Malachi and I were nearly late, thanks to the bus, but we got there on time.  Jeremiah went in without a backward glance and Isaac had to be prized off my leg.  He had a good day though, he is absolutely shattered now.  Pictures tomorrow hopefully.

The end of the holidays

Just one more day and the older 2 will be going to school.  We've done some tie dying this week which mostly turned out well.  We watched some of the paralympics and Isaac was curious about why the althletes didn't take their wheelchairs in the pool.  Malachi is ready for the 9-12 month clothes to come down from the loft.  Isaac has been wheeling himself around in his wheelchair and yesterday he went round the flower show wheeling himself most of the time.

Tomorrow we will be going to the hospital to pick up Isaac's piedro boots and hopefully something to support his feet in PE.  The name labels have arrived and I just need to iron them into their uniforms.  We are ready for school to begin although I know I would rather have more holiday.

However the school is not ready for Isaac.  The grab rails haven't been put in, the steps haven't arrived, the toilet seat isn't here and nor is the step for the toilet seat.  His chair assessment hasn't been done and they haven't applied for extra funding yet.  The adaptations will be sorted by the end of the week, I have been told and in the meantime the class TA will be taking Isaac to the toilet, holding his hand when he goes up and down steps and trying to avoid him being squashed.  And I am repeating to myself that he will only be going to school for 6 hours a week and trying not to panic.

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.

Jeremiah's birthday, our wedding anniversary and more school stuff

Jeremiah had a great birthday.  Here is is cake which was not made by me!

On Saturday we went to st fagins in the rain for Jeremiah's birthday treat.  It was very good but we got very wet.

Malachi was standing holding on with very little support.



Yesterday I asked the school senco for an update on the adaptations as I hadn't heard anything.  She hadn't heard anything either so she is going to try and chase her up.  The paperwork needs doing by next week so we're getting a bit tight for time now.  The senco is also not happy with the lady from the pims team who said that Isaac didn't need any adaptations because that slowed everything down.  After talking to me and getting to know Isaac she is also now seriously considering applying for extra funding for Isaac which is pretty much the same as a statement after months of people saying he wouldn't need it and me not agreeing.  We're still waiting to find out next years class allocations.  The headmaster has sent out a letter saying he appreciates the concerns of the parents but no decision has been made yet.  I hope they decide soon as Jeremiah is getting twtchy about it and is now asking several times a day.

Finally, today is our wedding anniversary and we have been married for 8 years.  I could only find one wedding photo on the computer.  Simon's uncle had been teasing me the day before saying that I would be late and I was determined to make it there on time.  I made it to the church with a couple of minutes to spare and I ended up being late because I'd forgotten the photographer would want to take photos.   

You can't see it very well in the photo but I had a cathedral length veil with sparkly bits in and a huge train.  One of the advantages of being short is the train and veil were about a foot longer on me than they were meant to be.







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.

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.