Ezekiel's new smile

On Monday Jeremiah Isaac and Malachi went off to Simon's Mum and Dad's house.  At the ridiculous hour of 5:30am on Tuesday me, Simon and Ezekiel set off for Bristol.  After some waiting around we were shown up to the ward and before I had time to get nervous Ezekiel was weighed, name tagged and gowned up.  The anaesthetist came round to see us and so did the surgeon.  Simon signed the consent form and the phone call came to say that they were ready for him in theatre.  The nurses pushed Ezekiel the short distance to theatre in his cot with Simon and I trailing behind.  Simon held him while he was put to sleep and then we both kissed him goodbye. 

We then had 3 hours before he would be finished so for the first time since Ezekiel was in special care we were on our own.  I wanted to get out of the hospital so after giving the nurses our mobile numbers we went off.  We had a mcdonalds breakfast and then went to asda.  We went back to the hospital and got the suitcase out of the car.  We still had a while to go so we went off to the restaurant which was bigger than I remembered and had a drink.  We went back to the ward and waited.  A magician came round to entertain the children so we watched that and waited some more.  Finally a nurse came and said that he was out and in recovery but they were struggling to wake him up so he would be moving to HDU.  So we moved the buggy and suitcase to HDU and went off to recovery.

When we walked into recovery I was listening out for the sound of Ezekiel screaming but there was silence.  When we got to him he was being cuddled by a nurse and was still fast asleep.  The porter decided the best way of taking him back to the ward was for me to sit in a wheelchair and hold Ezekiel while the porter pushed.  So off we went and the nurse from recovery disconnected Ezekiel from the portable sats monitor and attached him to the big monitor in HDU.  I sat in the chair and cuddled Ezekiel thinking that 6 months previously I was also cuddling Ezekiel in HDU.

Simon went home at about 4pm and about an hour after that the dr came round and said Ezekiel was doing so well we could move out of HDU.  So off we went to Otter bay where we were sharing a room with 2 little girls.  At 8pm we were on the move again and this time we were in Starfish bay which was a bay with about 12 beds in and seemed to be where all the children who were in short term for operations were.  So most of them had been in theatre that day and Ezekiel was the only one who slept though the night.  Thankfully when the cleft nurse came round later that morning she said we could go home as soon as the medicines were sorted so at 2pm we were on our way home.  Big sighs of relief all round.

Next week Isaac is having his squint repaired.

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.





 

 

 

 

Malachi's 2 year check

Today we went to see the new health visitor for Malachi's 2 year check.  Apart from flinging himself on the floor in a massive strop and making me feel like the worst mother ever, he did well and the health visitor ticked all her boxes.  However she said she was very concerned about his height as he hasn't grown since he was last measured in december although his weight has remained steady on the 9th centile, where it has been since the reflux stopped.  So she is going to speak to the GP about it and review his height again in June.  He has come a long way and is doing really well.

Meanwhile I left Isaac in a bad mood at school this morning and not even his favourite teaching assistant could cheer him up.  I'm waiting in the very long telephone triage queue to speak to the GP about his legs as the antihistamines don't seem to be working.  He managed a whole week at school last week, although he spent most of Friday in his wheelchair.

Jeremiah had a visit from the tooth fairy this week and now has another wobbly tooth.  He's looking very grown up these days and unlike Malachi he seems to be growing at an alarming rate.  Still, it will be good news for Isaac when he gets a whole load of barely worn hand me downs!

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.

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 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.

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!

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!

Orthopaedics

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.

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.

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

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.

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.

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.

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.