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 Baby groups. Show all posts
Showing posts with label Baby groups. Show all posts

Wednesday, 12 September 2012

20 months

Today Malachi is 20 months old.  He weighs 9.5kg, wears 9-12 month clothes and we are still breastfeeding.  He isn't walking yet but he loves to climb and pull my hair whenever he is in the ergo.

This week has been busy.  Yesterday Isaac went into school without crying for the first time.  Malachi and I went to the toddler group at the sports centre where we ended up seeing Simon's cousin's wife and her little girls which was a nice surprise.  I got to have squishy newborn cuddles and then she needed feeding so I ended up playing with Evie and Malachi on the bouncy castle.  Somehow in the last 20 years I have lost the ability to stay upright on those things!

Then it was a quick dash across town to pick up Isaac from school, home, lunch, pick Jeremiah up, cook tea and put the children to bed.  Today is my housework day so I've been trying to fight the tiredness and get some jobs done.  Isaac is also fighting tiredness and is now in a "high as a kite" mood.  School again tomorrow.

Thursday, 26 July 2012

The big boys are back!

Jeremiah and Isaac arrived home today.  The house is already a bit untidier with them here and it's definately noisier but it's so good to have them back.

On Tuesday, Malachi and I took advantage of there only being the 2 of us and we went to one of the toddler groups that is still open in the school holidays.  It was a bit more expensive than the other toddler groups we go to (£3.10 per child) but it was good value for money as they had a huge bouncy castle, various craft activities, ride on toys, cars etc.  Malachi loved it.

Today all 3 boys spent ages in the paddling pool.  The weather has been so lovely this week.  Photos to follow when I can get them off my phone.

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.



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.

Tuesday, 28 February 2012

busy days

Yesterday Isaac had his feet measured and he needs the next size up piedro boots.  I had a scary conversation with someone who's child has hypermobility about as severely as Isaac.  Her son dislocates his joints which Isaac doesn't and I thought he wouldn't do but she told me that her son wasn't dislocating at Isaac's age, he started at 5 years old.  There are times like this when I feel scared for his future.  Then today a lady came to the breastfeeding group with her 2nd baby who had been going when Isaac was tiny.  She asked how Isaac was, if he still had his feeding tube?  He has come a long way in his short life.

Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool.  I stayed and watched.  There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home.  He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.

Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day.  I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her.  We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again.  This time I will keep him on the increased dose for longer.  For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.

Monday, 9 January 2012

Back at school

Only 4 weeks and 4 days to go until half term.  3 day week this week as Simon has thursday and friday off work.  Preschool and breastfeeding group tomorrow, baby clinic and a hospital trip on wednesday.  On thursday Malachi will be one!  It has gone so fast.  I can't believe it was a year ago that we sat watching 9 months and hoping watching another baby being born would kickstart my birth hormones.

Tuesday, 29 November 2011

End of November

I've been quite lax with my blog this month.  I've had a cold, Jeremiah and Isaac have had tummy bugs and now Isaac has a cough.  He has been coughing so much at night he is being sick so I'm spending rather more of the night than I'd like changing sheets.  Meanwhile Jeremiah has woken up, offered helpful suggestions and told me how many days it is until Christmas.  I am so so tired.

By some miracle we made it to school on time today and Jeremiah is off school tomorrow because the teachers are striking.  Only 2.5 weeks until the school holidays, I can't wait.  Hopefully we will be able to go to some baby groups before then.  It feels like ages since we went to one and I think Malachi is missing his little friends.

Wednesday, 2 November 2011

Lots of little things

This week has been really busy with lots of little things.  Isaac's new piedro boots have come.  Not red ones like we ordered but he likes them anyway.  I have been chasing up my blood test and getting nowhere.  Malachi and I have been allowed back to the breastfeeding group where there were 3 other mums and a very sheepish looking health visitor!  I have made lentil and bacon soup.  Isaac has been going to preschool.  Jeremiah has been building things out of lego.  Lots of little things

Friday, 14 October 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.

Friday, 30 September 2011

That friday feeling

It's Friday and Simon is off work next week thank goodness.  We've had a busy week this week.  Tuesday we went to breastfeeding group.  Only 4 of us this week and one is going back to work on monday.  Then in the afternoon it was the time to chat group.  It was just Mel and I (again).  We decided to make sensory bottles next time for one of the physios who has recently had a baby. Wednesday was preschool and so was Thursday.  Today was my "day off" so I started blitzing the boys room.  I've also been tie dying some white cot sheets and some other bits ready for when Malachi moves from the moses basket into the cot.  I don't think the cot bedding will be dry in time for tonight but we should be putting away the moses basket at some point this weekend.

This afternoon Jeremiah was in a special assembly at school.  He was one of 2 children with a speaking part and he did really well, he spoke loudly and clearly.  Unfortunately Malachi was also speaking loudly and clearly lol so once Jeremiah had done his bit we left.

Next week Malachi has appointments with Nicola and his physio.  Isaac has an appointment with his occupational therapist (I'm hoping she will discharge him).  I have a parents forum meeting at the childrens centre so it's going to be another busy week.

Monday, 19 September 2011

Isaac's journey in pictures

Last week I finally got round to putting the photos from baby group on a CD for my friend.  While I was looking through the old photos it made me think about how much progress Isaac has made over the last 3 years.
Me and Isaac minutes after birth


With his NG tube in aged 5 months


At Tog aged 9 months


Isaac on his 1st birthday weighing 14lbs


Isaac aged 18 months


Standing with support aged 22 months


Isaac in his special needs buggy.  Aged 2 years 2 months


In his standing frame aged 2 years 7 months


"Look Mummy I is walking"  aged 2 years 10 months


Proud big brother aged 3 years




Wednesday, 14 September 2011

Wednesday weigh in

Today I went to the childrens centre to see the health visitor and get Malachi weighed.  He weighed in at 7.2kg which is 15lb 15oz.  His head lag is improving too which was encouraging.  He has been nearly sitting for over a month now so it's nice to know he is improving in other ways.  I had a chat with the health visitor about the breastfeeding group and it was suggested that the mums of older babies could meet in the new room at rockwell green.  One of the staff at the children's centre has asked me to be a case study for the childrens centre that they can show to ofsted as an example of how the childrens centre helps individual families.

Tuesday, 13 September 2011

Tuesday ramblings

Just me and Mel at time to chat today.  I got to take home the jaffa cakes though so it's not all bad news!  Mel told me Isaac had been mentioned at MAISEY today along with all the other children starting school in September next year.  The lady who runs TOG just said he was doing brilliantly and will be leaving TOG at Christmas.  He will still be on MAISEY and have a transition to school meeting in the summer term.

The powers that be in charge of breastfeeding in somerset have decided that as of October 11th mums with mobile babies and toddlers will no longer be welcome at the breastfeeding group.  The ladies who run it are trying to sort out another venue for those of us no longer allowed to attend, which is most of us.  I think they are making a huge mistake to be honest but only time will tell.

Preschool tomorrow and getting Malachi weighed.  Another day of rushing around like a mad thing.  2 weeks and 3 days until Simon's week off work!

Monday, 12 September 2011

Malachi - 8 months

Malachi is 8 months old today.  This weekend he has done a bit of rolling and he's getting quite good at it.  Today has been a manic day.  Took Isaac to TOG (Taunton Opportunity Group) today.  Malachi and I went to new parents group and then we all went to the drop in group this afternoon.  Isaac slept 13 hours last night and he was still tired this morning.

I've been promoting the time to chat group this summer and so has Mel, the portage worker.  Today 3 mums said they'd be there which is an exciting yet terrifying thought.  Mel and I have been meeting up for a year now trying to run a group that nobody else goes to and while it's exciting that we might get some other people coming, I'm worried that they'll come and not like it.  I'll let you know how it goes tomorrow.

Thursday, 8 September 2011

Isaac at preschool and assorted ramblings

Isaac went off to preschool for the first time yesterday.  He was absolutely fine and went off to play like he'd been going for years.  This morning he took one step in the door and burst into tears.  Absolutely shattered.  I had a chat with the supervisor and we agreed that I would go and have a wander round town for 5-10 minutes and then phone them to see if he had settled.  When I phoned he was fine so I went home.  He'll be in bed early tonight I think, it's been a long week for him, and for all of us.  Thank goodness it's Friday tomorrow.

On Tuesday we went to breastfeeding group.  Apparantly there has been complaints from other mums about older children being at the group so they have stopped coming.  The health visitor has suggested that we have 2 groups, one for non-mobile babies and one for mobile babies, toddlers and babies with older siblings who come too.  Problem is I can't see them being able to find any peer supporters to run the group for non mobile babies if you have to have breastfed for 3 months at least to do the course (they prefer 6 months) and then you have to have childcare for your baby when he or she becomes mobile.  From a selfish point of view it's annoying for me because I had volunteerd to do the peer supporter course but I can't now because they need someone for the non mobile group and I have Isaac and hopefully Malachi will be on the move soon anyway.  Apart from that it was lovely to have some adult conversation again and 2 of the mums announced their pregnancies which was all very exciting and made me feel quite nostalgic although any hint of broodiness stopped when they started talking about morning sickness!

Yesterday after I'd taken Isaac to preschool I took the opportunity to get as much infatrini milk for Malachi as I could fit in the buggy.  I managed to get one box in Isaac's seat and 2 bags in the basket.  It's a good thing I thought of that as the pharmacy have said that I have to collect Malachi's medicines all in one go rather than in little bits at a time like I was doing.  After school we went to the after school club at the church which Jeremiah's school is attached to.  Parents stay and sit in the corner with tea and biscuits while the school aged children play games, do a craft activity and listen to a story.  The toddlers mostly chase each other round the church.  This time Jeremiah was old enough to do the activities without my help so I got to have a good gossip and a cuddle with my friend's baby girl.  Isaac came up to me while I was cuddling the baby and he said in a loud whisper "mummy, you've got the wrong baby"

Like I said, it's been a long week and it's not over yet.