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, 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.