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.

There is no "m" in Zechariah

Introducing Zechariah Joseph, born on 13th June 2014 weighing 7lb 6oz.  Malachi insists he is called "Zechamiah", which has led to Isaac shouting "there is no m in Zechariah" on a regular basis!

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.

Latest news

We were at the hospital 3 times in the last fortnight.  Ezekiel's hip ultrasound went really well.  His shallow hip socket has sorted itself so no need for treatment.  Malachi has new piedro boots on order.

Isaac had his eye appointment last week.  His operation in June wasn't successful, probably due to his hypermobility so he needs more surgery in October.  Until then he has to wear an eye patch for 3 hours a day.

The bathroom is finally finished.  We have a shower that works and a toilet that doesn't leak!  Next job - fixing the guttering.

Ezekiel currently weighs 4.7kg which is about 10lb 5oz.  We are currently feeding him every 3 hours, which usually involves waking him up to feed and him taking a long time to finish the bottle.  This usually means I have about an hour to get some housework done and play with Malachi before it's time to express and feed again.  I am going to the baby clinic to get him weighed now which is good in a way as I can go when it suits me which doesn't happen so much with home visits.  On the downside we often end up seeing a health visitor who doesn't know Ezekiel and who tries to make "helpful" suggestions when I hadn't actually asked a question.

Although we've had a lot of comments from adults about Ezekiel's lip, some positive, others not so much, children seem to not notice, or not comment anyway.  One of the children In Isaac's class was talking about it yesterday at the end of school and Isaac's friend interrupted him saying "but he's cute and we love him".  Sums it up perfectly and made me smile. 

Lastly I haven't got a date for Ezekiel's first operation.  I'm trying not to think about it which isn't helped by people constantly asking.

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.





 

 

 

 

The rest of last week

Last Tuesday, Ezekiel and I went to the breastfeeding group.  As it's for mums with babies up to 4 months now we probably won't be able to go again before Ezekiel is too old.  Still, it was nice to have a chat to other mums with babies the same age as Ezekiel.

Wednesday was my day off!  Well, a day off from appointments anyway.  I spent a big part of the day sorting out the outgrown clothes and putting them in labelled boxes to go up in the loft.

Thursday was mine and Ezekiel's 6 week check.  All fine except my blood pressure was a bit high.  I was holding a screaming Ezekiel at the time and willing the appointment to be finished so I could go and feed him so that's probably why. 

Friday was physio.  Ezekiel has low muscle tone in his arms and core and high muscle tone in his legs.  We have some exercises to do with him and we see her again in 2 weeks.

Jeremiah and Isaac finished school on Monday.  The health visitor came to weigh Ezekiel on Monday and she is so pleased with his weight gain we only have to get him weighed once a week now.  This week has mostly been taken up by feeding, pumping, housework and various activities at home.  I haven't attempted to take all 4 of them out on my own yet.  Tomorrow we will be picking up the big car from the Vauxhall garage.

A busy week

Last week my mum and dad were staying so I decided to get some appointments out of the way while I had the chance to leave Malachi with my mum and be chauffeured around by my dad.

On Sunday, Isaac had a birthday party to go to.  Unfortunately I hadn't realised it would be a disco and I'd also forgotten to bring his ear defenders so it was a bit of a disaster and after 45 minutes of Isaac refusing to go more than a few yards away from the entrance we gave up and took him home.  I did get to show off Ezekiel though which was good.

On Monday, Ezekiel had an appointment with audiology followed by another one with Nicola.  He passed the first hearing test.  When it came to the second test there was too much interference so we need to go back next month for another go.  As I was coming out of Audiology I ran into the chaplain who conducted Elisha's funeral.  It was so lovely to see her again and to show her Ezekiel.  Then we went to see Nicola and Julia, the dietician.  They were both really pleased with Ezekiel's progress.  Nicola is going to keep an eye on his weight gain, muscle tone, clicky hip and head size (basically everything except his cleft lip and palate).  Ezekiel's results of his initial genetics tests have come back normal and Nicola also explained why Ezekiel needed CPAP after really good apgar scores.  Basically, the apgar scores show a baby's condition in the few minutes before birth.  So Isaac, who had an initial apgar score of 5 was distressed in the last few minutes of labour but recovered quickly.  Ezekiel was perfectly fine before he was taken out but after 30ish minutes of being born, his lungs got tired and he needed some help.

Will update on the rest of the week tomorrow.

Now we are six

According to Jeremiah we weren't a "proper" family of 6 until Ezekiel came home.  He came home on Monday and it's been so lovely being home with all 4 of them together.  He is still struggling with weight gain and still very sleepy and floppy.  But he is home and that's something to celebrate.

Jeremiah turned 7 yesterday.  My biggest rainbow baby is looking very grown up these days, with 2 of his baby teeth gone, an obsession with lego and beginning to favour star wars over Thomas the tank engine.

How tiny I thought he was then but also how huge he was compared with Ezekiel.

Jeremiah aged 4, with Isaac aged 2

 

and last week, with Ezekiel

 



 

Last week was sports day for Jeremiah and Isaac.  I must admit I was dreading it when Isaac said he was doing a running race, remembering my own sports day humiliations but the school handled everything really well.  Isaac and the other children who have mobility problems were given a head start, in fact Isaac started half way down the track.  Isaac came joint 3rd out of 4 in his race.  Jeremiah was in the relay and his team came 3rd out of 4 so they are both the very proud owners of a bronze medal each.

 



Jeremiah's due date

Sometimes I acknowledge this day and sometimes I don't.  Well actually it was yesterday but Simon was on the computer yesterday evening when I remembered what day it was.  7 years ago I was 40 weeks and 1 day pregnant with Jeremiah.  I'd been in latent labour for a while by then, nearly 2 weeks I think. 

With Eleanor and Elisha, their due dates seem so important because they are their "should have been" birthdays.  With Ezekiel, his due date will be used on growth charts and for his operation dates for the first year of his life.  He will have 2 ages, his actual age, based on his date of birth and his corrected age, based on his due date.

For Jeremiah, Isaac and Malachi, their due dates don't seem to matter at all.  I never expected them to come on their due dates and none of them did.  Although Malachi came fairly close, arriving at 40+2.

Recently I was talking about due dates with Jeremiah.  I was trying to explain to him that Ezekiel was unlikely to come on his due date (didn't think he'd be that far off though!) and telling him when he, Isaac and Malachi were born.  He was shocked that he was born at 11 days past his due date and very impressed that Malachi was only 2 days past his.

Plodding along

Ezekiel is much the same.  Still sleeping a lot and still struggling to breastfeed.  I've got a cold so I'm not allowed into the neonatal unit.  On the plus side he is now officially "term" and I can now say that he was born premature rather than he is premature.  He has his discharge meeting on Wednesday and hopefully we'll be able to take him home soon after that.

Malachi is doing really well with his walking and his speech.  Simon has been taking him on the school run without the buggy so he has been getting a lot of walking practice.

Isaac is much the same too.  He has his squint repair on 27th June which is scarily close now.  Sports day is also looming and I need to talk to the school senco about how Isaac is going to take part.  His blue badge expires soon as well, must get that renewed.

Jeremiah is enjoying his swimming lessons at school.  He got his first swimming certificate yesterday, along with the rest of the children in his class.  http://www.stjohnscofeprimary.co.uk/keyinfo_detail.asp?Section=3&Ref=186

I am still pumping and struggling with the sitting still aspect of recovery from surgery.  No doubt in a few weeks I'll be desperate for a rest and won't be able to!  Simon is going back to work on Monday so his mum is coming to help do all the things I still can't do yet.

Introducing...

Our 2nd rainbow baby

Currently known as "Severus" (for those of you who have read some of the Harry Potter books but not the last one, he turns out to be a nice man in the end!).  Due in July, just after Jeremiah's birthday.  As you can probably see from the photo, Severus has a cleft lip.  We don't know about the palate yet but in the bottom photo he/she is sucking his/her thumb which we are hoping is a good sign when it comes to feeding.  For the benefit of my readers who have suffered baby loss and/or infertility I will try to remember to include (pregnancy mentioned) in any pregnancy related blog entries so you can avoid reading them if you prefer.

In other news, Isaac's DLA has been awarded.  Same rates as before (middle rate care, high rate mobility) but for 5 years this time instead of the usual 1-2 years.  We have decided to get a car with the mobility component this time so we have chosen a silver vauxhall zafira and we are currently waiting for the motability people to check and approve the paperwork before the vauxhall garage order the car.  Meanwhile I'm trying very hard not to get impatient.  We've been without a car we can all fit in for about a year now and I've really missed being able to go out places as a family.

This week I've been...

...Suffering with a cold and doing Isaac's DLA form.  I hate that form, 63 questions where I have to compare Isaac to a "normal" nearly 5 year old and explain the differences.  Also a new question wanting details of all appointments for the last 12 months.  All done while trying to have a conversation with Malachi about the Octonauts.  At least it's done now and I just have to hope that it's renewed at the same rate as before, for longer than a year this time.

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!

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.