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.

Wednesday, 19 December 2012

Wisdom from Jeremiah

Jeremiah: I think my teddy should stay in my bed during the day and not go downstairs or go out.
Me: Ok, any reason why.
Jeremiah: (sigh) because bears go to sleep in winter.

Why did I ever think he would get less cute as he gets older?

Wednesday, 28 November 2012

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.

Wednesday, 7 November 2012

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).

Tuesday, 6 November 2012

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!

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.


And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment


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.

Tuesday, 9 October 2012

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.

Monday, 8 October 2012

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.

Tuesday, 2 October 2012

Welcome to Holland

If you have a child with special needs, sooner or later someone will send you this story:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Like many other parents of children with special needs I think it's a nice story when told by someone else who has also ended up in Holland but incredibly insensitive when written on a postcard from Italy.  There are a few songs, stories and poems like this around, some of which I like and some of which I don't.

I really don't like the ones that paint an unrealistic picture of children with special needs.  Children who have physical disabilities are mostly like any other child except they have certain limitations.  Isaac isn't a saint like being who smiles at old ladies and generally looks ill.  He is determined and fiesty.  He says "mummy, can I have ....?" at various things while going round the shops.  In many ways he is like any other 4 year old.

Of course in many other ways he is different from other 4 year olds and we have really been feeling it since he started school.  He is doing 3 mornings at school this week and already he is struggling and it's only Tuesday.  He's not settling very well either but that could be partly to do with his part time hours.

Saturday, 22 September 2012

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.

Monday, 17 September 2012

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.

Wednesday, 12 September 2012

20 months

Today Malachi is 20 months old.  He weighs 9.5kg, wears 9-12 month clothes and we are still breastfeeding.  He isn't walking yet but he loves to climb and pull my hair whenever he is in the ergo.

This week has been busy.  Yesterday Isaac went into school without crying for the first time.  Malachi and I went to the toddler group at the sports centre where we ended up seeing Simon's cousin's wife and her little girls which was a nice surprise.  I got to have squishy newborn cuddles and then she needed feeding so I ended up playing with Evie and Malachi on the bouncy castle.  Somehow in the last 20 years I have lost the ability to stay upright on those things!

Then it was a quick dash across town to pick up Isaac from school, home, lunch, pick Jeremiah up, cook tea and put the children to bed.  Today is my housework day so I've been trying to fight the tiredness and get some jobs done.  Isaac is also fighting tiredness and is now in a "high as a kite" mood.  School again tomorrow.

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.

Isaac on his first day at school

Tuesday, 4 September 2012

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.

Sunday, 2 September 2012

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.

Wednesday, 29 August 2012

Update on Maddy's letter

She now has a facebook page and has been on the news and in the newspapers in Australia.


Please like her page, share it on your facebook/blog and help raise awareness of Ehlers Danlos Syndrome

Thursday, 23 August 2012

Things we haven't done yet

During the summer term if the older boys want to do something that's going to take up a lot of time I often tell them we will do it in the holidays.  At this stage of the holidays we usually realise we haven't done most of it!  So this week we have been to Upper Holway play area and French Weir park.  Just got playing in the ball pool, making new all about me books and tie dying t-shirts to do before they go back to school.

Sunday, 19 August 2012

Playing quidditch

Well, the 4th week of the holidays has gone and we have mostly been playing quidditch in the garden.  Everyone riding on brooms, mops, toy golf clubs etc.  Trying to get the football (quaffle) in the trampoline net while also trying to find the bouncy ball (snitch) in the grass.  It has mostly been just me, Jeremiah and Isaac playing but today I sat Malachi on a broom and ran around with him and he was shrieking with excitement so I must make sure I help him play again next time.  Simon's Dad also played and spent some time moving the snitch around which make it more fun as the games were lasting longer and more chance to score goals.

Yesterday Simon, his dad, Jeremiah and Isaac went on a 6 mile hike.  Simon spent most of the time trying to get the wheelchair through the mud and I had to clean the wheelchair afterwards but I'm glad Isaac was able to be included.  Today on the radio they were talking about the paralympics and someone mentioned wheelchair rugby so I think I got off lightly.  I wouldn't want to clean a rugby players wheelchair!

Monday, 13 August 2012

Tiny shoes

Malachi's piedro boots, size 17 in european sizes.  I think this is a size 1 or 3-6 months in english sizes.

Not sure where the pink stripe came from.  And the jubilee building under construction.

The orthotist managed to sort Isaac out at the same time which was nice.  He now has some black piedro boots on order with velcro fastenings (I never knew they did them with velcro fastenings) and he thinks inserts to be worn inside his plimsolls/daps will be what he needs for PE but he needs to check his notes first.  All in all a very successful appointment.

Sunday, 12 August 2012

19 months

Malachi is 19 months old today and I am still breastfeeding him.  I am beginning to hope we might make it to 2 years this time.

Friday, 10 August 2012

This is how he rolls

Today we went into wellington to get more photos developed for the holiday scrapbooks and to buy a few bits from ASDA.  Isaac walked for the first part and then got into his wheelchair for a rest.  While we were going round ASDA, I took this photo:

They looked so funny, Jeremiah driving like a racing driver and Isaac sat calmly reading a magazine!

Thursday, 9 August 2012


Because I keep forgetting to include photos with my posts.

Malachi playing with his jumping frog


Jeremiah and Isaac waiting for a bus in the rain

Wednesday, 8 August 2012


Yesterday Isaac had his appointment with the orthopaedic surgeon.  We got there early because the buses are so unpredictable and I'm glad we did because we got called in 20 mins before his appointment time.  We took the ergo and the wheelchair and I found the ergo so much better than my other baby carrier.  I think carrying him on my back will be better though as it's tricky paying the bus driver while trying to stop little hands from getting in my purse!

Isaac was still tired from his holiday 2 weeks ago and he was reluctant to show the dr his walking skills.  But I managed to persuade him to get off the examination couch where he was trying to fall asleep and walk around the room.  The dr agreed with me and the GP about his ankles being too unstable for him to wear plimsoles/daps for PE at school and so he needs to see the orthotist to sort out something.  We already have an appointment with the orthotist on 3rd september to measure his feet for new piedro boots so we are going to have the PE shoes appointment then as well.  We came out 10 mins before our appointment time so after a quick detour to the hospital shop for the older two to choose some sweets we came home.  We were only gone for an hour and a half which has to be a new record.

Saturday, 4 August 2012

My new ergo is here!

So after a lot of dithering I finally bought an ergo baby carrier in a very fetching shade of cranberry.  It arrived today and I've been having fun trying it out.  According to the instructions the weight limit is 20kg which means technically I could carry Jeremiah and Isaac in it.  I did try it with Isaac in but it was so low round his back that I decided not to try Jeremiah in it.

Malachi loves it and he feels so much lighter in it than he did in the 2nd hand mothercare one.  I think it will be more comfortable with him on my back but I'm not brave enough to try that yet.

Thursday, 2 August 2012

out and about

After 2 days at home I decided to take the boys into wellington to get Malachi weighed, buy a few bits in ASDA, get some photos printed and hopefully run into some people we know from school, preschool etc while we were there.  Not literally run into, although with Jeremiah pushing the buggy it was fairly likely!

We got Malachi weighed and measured at the childrens centre (8.77kg, 73cm).  He'd lost a tiny bit of weight and his length had slowed down a bit but as he'd eaten quite a lot just before the last weigh in and hadn't this time I wasn't worried.  He is now following the 2nd centile for weight and is 2.5cm below the 0.4th centile for height.  Nicola and the dietician are still convinced that if he puts on loads of weight he will catch up in length but so far that hasn't happened.  But as he is no longer failure to thrive the various professionals aren't panicking about his weight so we will carry on with the small amount of infatrini he is on and keep weighing him every month.

While we were in the childrens centre the builders at the school next door set off the smoke alarm so we all had to troop outside to the park and wait to be let back in.  Isaac in particular wasn't impressed until the fire engine turned up!

On the walk back into town one of the front wheels of Isaac's wheelchair fell off going up a kerb and Jeremiah ran over a piece of glass and a thorn with the buggy which proved to much for the slime filled inner tubes.  I managed to get the wheelchair wheel back on.  It's the 2nd time it's happened so I knew what to do but I'll be phoning the engineers today to get them to come and have a look as it's not very safe and if the bolts fell down a drain when the wheel flys off another time we could end up stranded.  We were only a little way from the bike shop by this point so I pushed the buggy while Jeremiah pushed the wheelchair, trailing slime as we went.

So it was an eventful trip out but we did end up meeting 4 friends which was nice.  Getting out and about is hard with all 3 of them and the wheelchair etc but I'm glad we did it.  Internet shopping is all very well but I think we all needed a change of scene and to talk with different people.  We're off to the hospital on Tuesday which will be a good opportunity for Isaac to practice self propelling on the shiny floors.

Friday, 27 July 2012

Elhers Danlos Syndrome

Last time I mentioned Ehlers Danlos Syndrome on my blog my post views suddenly went up.  When I typed Ehlers Danlos blog into a search engine I got a few links to various blogs but most of them hadn't been updated for a long time.

Since I posted Maddison's letter on my blog I have thought about the things she wrote about the lack of awareness of Ehlers Danlos Syndrome.  I know I had never heard of it until Isaac was diagnosed with hypermobility and I did some googling.  If you look hard enough there is a lot of information and online support groups out there but you do have to look for it.

Somewhere between 1 in 5000 and 1 in 10,000 people have Ehlers Danlos Syndrome.  This makes it rarer than Downs Syndrome (1 in 800), Autism (1 in 100) and Cerebral Palsy (1 in 278).  It is only slightly rarer than Spina Bifida (7 in 10,000) which I was quite surprised at as I think Spina Bifida is a lot more well known than Ehlers Danlos Syndrome.

When people ask me what's "wrong" with Isaac (and we get this more often now he has his wheelchair) and I explain about Ehlers Danlos Syndrome I normally get the "I've never heard of that before" response.  If I say that the main symptom is hypermobility a lot more people know what that is also most people's experience of this is being able to bend their little fingers and thumbs backwards.  It's not much but it's a start.

Thursday, 26 July 2012

The big boys are back!

Jeremiah and Isaac arrived home today.  The house is already a bit untidier with them here and it's definately noisier but it's so good to have them back.

On Tuesday, Malachi and I took advantage of there only being the 2 of us and we went to one of the toddler groups that is still open in the school holidays.  It was a bit more expensive than the other toddler groups we go to (£3.10 per child) but it was good value for money as they had a huge bouncy castle, various craft activities, ride on toys, cars etc.  Malachi loved it.

Today all 3 boys spent ages in the paddling pool.  The weather has been so lovely this week.  Photos to follow when I can get them off my phone.

Monday, 23 July 2012

Malachi's orthotic appointment

Jeremiah and Isaac are away on their holidays so it was just me and Malachi at the hospital this morning.  The good news is that they now do piedro boots small enough for Malachi's feet.  The bad news is the tiniest ones look like the shoes you hire when you go bowling.  Hopefully it won't be long before his feet are big enough for the boots like Isaac has which look a lot nicer I think.  I also took the opportunity to take some photos of the old building before it gets knocked down.  I have fond memories of pacing up and down the corridors there while in early labour with Malachi. 

Saturday, 21 July 2012

Pool party

Today we went to a pool party at Simon's auntie's house.  A good time was had by all and I got to have squishy newborn cuddles with Simon's cousin's new baby.

Malachi was very interested in the water although when he got in he decided he didn't like it.  Isaac wasn't keen at first but when he finally got in he loved it.  Jeremiah loved the water as usual.

Friday, 20 July 2012

End of term

Jeremiah finished year one yesterday and today was Isaac's leaving party and presentation thing at preschool.

No school runs for six weeks!  I've got a few things planned for the holidays, including various craft activities and trips to the park.

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

Monday, 16 July 2012

Isaac's new wheels

Isaac's wheelchair arrived on friday, earlier than expected.  We have taken it out 3 times and he has also pottered around the house, garden and car park.  In some ways it's easier than the double buggy and in some ways it's harder.  The wheelchair with Isaac in feels a lot lighter and easier to steer but it's also narrower which makes pushing it awkward when I have Malachi strapped to my front.  I'm carrying everything in a rucksack which is awkward but at least I will think carefully before buying random stuff in ASDA if I have to fit it in a rucksack.

However Isaac absolutely loves it which makes all of it worthwhile.  In the buggy he was almost always in a sulk or a strop but in the wheelchair he talks to everyone.  Jeremiah's teaching assistant got a shock this morning at school when Isaac started talking to her.  Malachi is also enjoying having a better view.

Isaac in his wheelchair

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, 10 July 2012

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.

Monday, 2 July 2012

Jeremiah is 6

6 years ago I gave birth to Jeremiah at home in the birth pool.  I can't believe it's been six years since I held that tiny slippery person in my arms.

I don't have any of us together in the pool (just a few of me in labour which I will never post on the internet!) but here is Jeremiah about 1 hour old in the moses basket.

Jeremiah aged 1 and looking very like Malachi is now

Jeremiah aged 2 hosing down the birth pool after Isaac's attempted home birth

Jeremiah aged 3 at legoland

Jeremiah aged 4 with Isaac aged 2

Aged 5 in the pool where he was born

Aged nearly 6

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.

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.

Saturday, 16 June 2012

Tesco in a wheelchair

Today Simon's Mum took me, Isaac and Malachi to Tesco to do the weekly shop.  There were no trolleys with 2 toddler seats and trying to get Isaac in one of those seats is tricky these days.  So rather than get a separate trolley just to sqeeze Isaac into the toddler seat I went and borrowed one of the tesco wheelchairs.  As it was adult size I wasn't expecting Isaac to start propelling himself around and make a good job of it too.

Thursday, 14 June 2012

Wheelchair appointment

Isaac had his wheelchair appointment on Monday which went really well.  He has chosen a red wheelchair with spiderwebs on the spoke guards.  Just got to wait until it comes now, should be just in time for school in September.

Some photos of the smallest one at the children's centre who is now 17 months old!

On Tuesday we had another milestone, 17 months breastfeeding.  This time last year I was pumping and freezing while Malachi had neocate formula.  I thought this would be the end of breastfeeding but a year later I am still breastfeeding him.

Isaac has been really tired lately and struggling with all the appointments.  Going to Exeter really wiped him out and he spent a lot of the pre-school session on Tuesday lying down.  So I cancelled the occupational therapist appointment on wednesday and hopefully he will still be awake this afternoon for the school visit.

Thursday, 7 June 2012

The day Malachi said "mama"

I've been wondering about Malachi's speech recently, especially as both Jeremiah and Isaac had speech therapy when they were younger (although Isaac had speech therapy for feeding issues rather than speech).  He's been saying Dada for a while now and making noises and of course there is always one child at toddler group who is speaking in sentences at this age.

But yesterday he said mama for the first time.  And today he keeps saying it and looking very pleased with himself.  Jeremiah and Isaac have been trying to get him to say their names but he can't manage that yet.

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.

Monday, 4 June 2012

7 years

since my precious first baby was born at 12 weeks and 1 day.  I always thought miscarriage happened to other people, older people mostly.  But 7 years ago I found out it could happen to anyone, even me.

Friday, 11 May 2012

Malachi and physio

Malachi had his physio session on Wednesday.  We nearly didn't make it thanks to the bus we needed to catch being a double decker.  The physio was really pleased with his progress and thinks he will be walking in the summer.  I sometimes feel that I don't take Malachi's issues seriously enough because he is not as bad as Isaac so it was good to know that he really was doing well and it wasn't just me thinking that.  He is into everything at the moment, trying to nose dive off the changing mat and will crawl towards an open stairgate at the speed of light.

The physio wants Malachi to have piedro boots but his feet are so tiny they don't make them small enough.  He is being referred to orthotics anyway to see if they can suggest anything.  She also remembered Isaac which I thought was impressive seeing as she last saw Isaac at 5 months old.  She said nobody could forget Isaac but I'm not sure if that's a good thing or not!

Isaac has a GP appointment next week to be referred to the orthopaedic team to sort out shoes for him to wear for PE at school.  Then occupational therapy to measure him for a chair.  Jeremiah is doing well.  They had a supply teacher yesterday who brought his guitar which was very popular with the class.  Even the little girl who has autism and doesn't do change well really liked him.

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.

Friday, 27 April 2012

Isaac is 4

From this tiny newborn...

...To this 4 year old.

Still can't work out how to turn pictures round!  So much has happened in the last 4 years.  I have learnt to trust my motherly instinct, to feed a baby via nasogastric tube, to always bring a book to hospital appointments, to always bring a quilt when staying in hospital, that my husband can drive as fast as an ambulance, that a buggy with a 4 year old and a 1 year old in is heavy, that an adult with a baby on her lap can go very fast down the big blue slide at softplay, that I can cope with more than I think, that I can breastfeed a baby with low muscle tone, that portage is amazing, that Isaac can do most things with a bit of help.

While I was trawling through facebook to find my then and now photos I also found this one of Jeremiah aged 2 and Isaac aged 3 months.
They look so different but the expressions on their faces are the same as now.

In other news, Isaac has his school place at St Johns where Jeremiah goes.  We have 2 occupational therapists and no wheelchair assessment.  But we are slowly moving forward.  He is going to be in a class of 23 they think with 4-6 children who have special needs.  Jeremiah's year group has 16 children in so they will probably be split up into mixed age classes again.

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.

Friday, 23 March 2012

3 months

How very softly you tiptoed into our world.
Almost silently.
Only a moment you stayed.
But what an imprint your tiny footprints have left upon our hearts.

Monday, 5 March 2012


At Great Grandad's birthday party

The new park on our way home from school has just opened.  We've been twice and I've tried to take photos of Isaac on the swing without much success!