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.



Showing posts with label bus. Show all posts
Showing posts with label bus. Show all posts

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.

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.

Thursday, 9 August 2012

Photos

Because I keep forgetting to include photos with my posts.


Malachi playing with his jumping frog

Reading

Jeremiah and Isaac waiting for a bus in the rain



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.

Sunday, 26 February 2012

Long time, no blog

This week we have been walking to school.  Every time we do this I'm amazed at the amount of money we don't save.  The buggy has needed 2 new inner tubes which cost £20.  Tomorrow Isaac has a hospital appointment which will cost us £9 in bus fares.  The weekly tickets would have cost us £33 pounds so we have saved a grand total of £4.  Oh dear.  Hopefully we will soon be fitter as a result, at the moment I think we are all just tired.

On Tuesday someone is coming to observe Isaac in pre-school to decide how much help he will get at school.  I'm going to stay while she does it so that I can tell her if he is having a good day or not.  I'm looking forward to seeing him at preschool as normally I just drop him off and go.

The weather has been amazing for February and Jeremiah and Isaac have been playing in the garden.  I will have to get some suncream!

Malachi has learnt to commando crawl and wave.  Simon got the 6-9 month clothes down from the loft and it's been lovely dressing him in all his "new" outfits.

Friday, 27 January 2012

Update on us

Malachi had his appointment with Nicola on Tuesday.  We were a bit late due to 2 double decker buses coming along one after the other.  I'd already dragged Isaac, Malachi, the folded buggy, handbag and changing bag onto a double decker bus once that day so I decided to take the chance that Nicola was running late.  Malachi was weighed (7.4kg) and measured (67.9cm).  Nicola was running late but I didn't mind that as I know she doesn't rush people when they have questions.  Also there is so much for the children to do in the waiting room.

It looks like Malachi had lost that weight and reducing the infatrini was a bit premature.  But increasing the infatrini again seems to be helping which is good so no need to panic about his weight.  He is also being referred for more intensive physio.  No news on Isaac's blood results yet.

Jeremiah got a certificate this week which was awarded at the church.  We sat at the back near the aisle so we could get a good view of the children coming in.  Jeremiah waved as usual and Isaac waved at Jeremiah and a couple of the other children who he knows as well.  I don't know why but I always get a bit emotional when I see the children walking in crocodile fashion from the school to the church.  The Headmaster first, then Haslett class, with two of them carrying the school flag.  Jeremiah's class (Newnham) is always right at the end as they are the youngest.  I think I'll need to take tissues with me the first time I watch Isaac walk to the church with the rest of his class.  Hopefully he will make it without falling over.