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, 26 October 2011

Oh tumbledryer I've missed you

My tumble dryer is fixed!  I've been catching up on the piles of washing that has been building up since the weather has been bad.  The man from medequip came to take away Isaac's highchair so we no longer have any special needs eqipment in the house.  Isaac proudly told the delivery man that he didn't need it anymore, so cute.

The highchair

Isaac waving goodbye to the highchair

The blood test on Monday was a disaster.  She tried 4 times but couldn't get it.  She got 1ml but that wasn't enough.  She asked me to go to the oncology department to get the rest as she thought they would be good at getting it as people who have cancer often have bad veins but by then I was bruised, the children were fed up and we were all soaking wet from the rain so I said I would go home and ring the oncology department.  It was a good thing I did that because the oncology nurse said I couldn't be seen there without a GP referral and even then probably not as I'm not an oncology patient.  So I rang the GP surgery and the receptionist was saying that the nurse there could have a go but I said no, I only wanted someone who was really good at taking blood to do it as I'd had 10 failed attempts already.  So the receptionist said she would get the GP to ring me the next morning.  The GP rang yesterday and she is going to talk to Nicola and ask her to persuade someone at the oncology department to do it.  I should hear from them by the end of the week.

Malachi in his new cardigan

Jeremiah with his special award cup

Jeremiah in the lego shop in Cardiff

Jeremiah and Malachi fell asleep holding hands

Monday, 24 October 2011

Photo of Malachi

My gorgeous littlest one
 I can't work out how to turn the photo round. 
Half term holiday this week.  Isaac is absolutely shattered.  He refused to walk for most of the day on Friday.  It's been a long half term for him.  He could really do with this holiday and some new piedro boots too.  The piedro boots have been measured for and ordered so hopefully it won't be too long.  I've got my blood test this afternoon, hopefully they get it this time.

Wednesday, 19 October 2011

Legoland and Malachi's 9-12 month check

On Saturday, nine of us went to legoland windsor.  We all had a lovely time.  Isaac enjoyed the adventure playground although he needed a lot of help.  Thankfully nobody had a camera handy when I was coming down the slide!  I didn't go on many rides but I was happy to watch and I enjoyed seeing the models in miniland and watching the show by the lake where there was lots of slapstick comedy and people pushing each other in the water.  Jeremiah was old enough to go on more rides this time.  We could easily have spent another day there, there was so much to do.

Yesterday was Malachi's 9-12 month check with the health visitor.  His weight was 7.6kg although he had just been fed.  The health visitor gave him 2 cubes and tried to get him to bang them together.  He just held one in each hand and gave her his best "you're being daft" look!  He picked up the raisin no problem and shoved it straight in his mouth.  I got a telling off because we haven't got socket covers (although Jeremiah could get them off from this age so I didn't see the point).  We got our free books and she was explaining how to read to him even though I've got 3 children and a degree in early childhood studies so I know all this stuff.  She stopped after a couple of pages and he shrieked and tried to take the book off her lol.  She asked me if I was worried about his development and I said no but I know he is behind.  She said he needs lots of stimulation which I already knew and that he should be going to a baby group at TOG which I don't agree with.  We have to see her again in a month.

Friday, 14 October 2011

wave of light

Eleanor's candle burning for the international wave of light 2011

Update on the breastfeeding group saga

This tuesday was the relaunch of the breastfeeding group.  I went to the childrens centre in the afternoon for the time to chat group and the staff there said there were loads of mums and babies there.  So no chance of the health visitors ringing me and begging me to come back then.  On wednesday I swallowed my pride and went to Isaac's preschool to ask if I could change his days so that I can go to the breastfeeding group with Malachi while Isaac is at pre-school.  On the way I met one of the peer supporters and we had a bit of a chat.  She said that all the other people who had been thrown out weren't happy about it either which was comforting to know as I thought it was just me.  The peer supporters in particular have made a big effort running the group.  The preschool were fine with me changing Isaac's days so I will be back at the breastfeeding group after half term.

I went to see the health visitor and she said that it had been decided that the group will be for mums with babies under one year only, regardless of how mobile they are.  So Malachi and I will be out on our ears again in January.  Apparantly seeing mums successfully breastfeeding babies over a year old will make the mums struggling feel inadequate.  I will carry on going to the breastfeeding group until we are chucked out again but I won't be getting there early to set up or staying late to pack away and wash up.

Monday, 10 October 2011

Jeremiah's special award

Jeremiah got the special award cup at school on friday.  Simon and I went to watch him get it in assembly.  When the teacher announced his name there was a big gasp and spontaneous applause, the teacher had to tell them to stop clapping!

Malachi has a cold.  Which means he is puking a lot.  I rang Nicola's secretary to see if he needs his medication increasing again or if we should wait it out.  I put him on the scales at the children's centre today when we were in for the baby group and he was 7.4kg so still following the line between the 2nd and 9th centile.

I had another attempt at getting my blood taken on friday.  It was not a success.  I have to make an appointment at the dr surgery for another go.

Tomorrow Isaac has an appointment with surgical orthotics to be fitted for new piedro boots.  I was chatting to another mum at the school gates today and she said that if I'm ever stuck at the hospital she is happy to pick up Jeremiah from school for me.  It's so hard to make friends with people when you see them most days but only for 5 minutes or so.  I feel like I'm getting there now though.

Two more weeks until half term.  And the tumble dryer man is coming!  I'm very excited which is a bit sad really.

Wednesday, 5 October 2011

Back to the hospital

On Monday we went back to the hospital to see Nicola and the physio.  Jeremiah was off school with a cold and a bit of a temperature and Simon is on holiday from work this week so all 5 of us ended up going.  Nicola was running late so we had 40 mins in the waiting room (thank goodness the boys love it there because there are loads of toys.  Malachi was weighed and measured (7.3kg 67cm).  We saw the physio who said that he has made some progress but he has dropped off the physical development chart again.  She gave us some more exercises to do with Malachi.

We then saw Nicola who was really pleased with his progress and she said we could try weaning him off the drugs when he gets to 8kg.  She also sorted out the microarray test.  Isaac needed his done in paediatrics so they sent us down to CAU.  There was a long wait there so we got sent back down to peadiatric outpatients.  Simon took Isaac in to have his blood taken and I could hear him screaming from the waiting room.  I just hope they got all the blood they needed this time.  We had to go to the phlebotomy department at the other end of the hospital for ours and I didn't fancy carrying Malachi, the changing bag and my handbag all that way so Simon went to get the buggy from the car.  Simon had his blood taken no problem but after 2 goes and wiggling the needle around (ouch) they couldn't get mine so I have to go back today when the head phlebotomist is in as she used to do all my pregnancy blood tests.

Yesterday Malachi and I went to the breastfeeding group and the hv told us I couldn't bring Isaac from next week as they are changing it to non walking babies only.  I'm not impressed I have to say.  I'm going to ask the preschool if we can change Isaac's sessions so I can still go.

Yesterday afternoon Isaac's OT came round.  She said she couldn't take the highchair, we have to wait for medequip to come and get it.  She also said she couldn't discharge him without checking with her supervisor first.

Monday, 3 October 2011

Tribute to a moses basket

Malachi is now sleeping in the cot!  After 5 years it's now finally time to put away the moses basket for the last time.  I washed all the frilly bits and put Malachi in it for some last photos.

I'm hoping that the extra room will encourage Malachi to move around more.  He seemed to enjoy being in the cot and he was happily chatting to his toy caterpillar.

Jeremiah only slept in it for 8 weeks because he was such a wriggly baby he liked to move around in his sleep.  Isaac used it for 14 months and Malachi for nearly 9 months.

Jeremiah in the moses basket at home, about an hour old

Isaac in the moses basket in the delivery room in hospital

Malachi in the moses basket in the delivery room