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.
Thursday, 29 December 2011
Thursday, 15 December 2011
Jeremiah's school disco was on tuesday. He started leaping about straight away and Isaac was more cautious. He got into it in the end though and although it was more like marching than dancing he had a whale of a time.
Monday, 12 December 2011
Friday, 9 December 2011
Only one week at school before the holidays. In some ways I'm glad there is only 1 week left but on the other hand I haven't done my christmas cards yet or finished my christmas shopping. Jeremiah was a cow in the nativity play yesterday. It will be Isaac's last day at TOG on monday, then the christmas party on thursday. It will be quite emotional I think. Isaac has been going for 3 years and the staff there have helped him so much. I was originally planning to keep him going there until he started school but we are really struggling with transport at the moment and he technically doesn't need TOG any more.
I managed to talk to the reception teacher about Isaac's school needs. I don't think she realised he was that severe to be honest. She is going to talk to the senco about him and she reassured me that if he can only cope with 2 mornings a week at first then that's fine and they won't rush him.
We have a furry houseguest at the moment. A cat turned up last night and we are trying to find her owners without much luck so far. Simon is going to take her to the vet tomorrow to see if she is microchipped.
Tuesday, 29 November 2011
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.
Saturday, 12 November 2011
Jeremiah had his school photos done this week. They are gorgeous. He also went on a trip with his class across Wellington to the Methodist church. This is one of the reasons I didn't become a teacher. Because taking 26 4 and 5 year olds out would be my idea of a nightmare. Still, everyone who went made it back in one piece and the teacher said they'd all been very good.
Isaac has had a good week. On Sunday we had a jamming session together. I held the guitar and did the chords while Isaac strummed. The look of wonderment on his face when he realised he was playing a song was amazing.
Waitrose does this charity thing where you get a green token and you get a choice of 3 local charities to vote for. You put your token in the box belonging to the charity you want to vote for and after a month or so they distribute some money between the 3 charities according to how many tokens are in each box. We normally only go to Waitrose to use the loo but this month one of the chairities was the play therapy department at the hospital. So we decided to go in, buy a cake and show our support. Isaac went one step further and sat on top of the charity box telling everyone to put their token in the middle slot. Anyone who didn't got a stern look and a "but the middle one is for the children at the hostital". When the manager came and told him to get down he pulled his disabled rights card and said "I've got tired legs". At this point I decided it was time to put him back in the buggy and go home.
Malachi is 10 months old today. Still not crawling or even sitting but he is so happy and smiley. He has 4 teeth and weighs 17lb 3oz which is on the 9th centile. I am going to organise for him to have a session in the multi sensory room at TOG before Isaac leaves. I think he will enjoy that, I know Isaac did when he was that age.
I got a phonecall from the genetics nurse this week. She said that they were going to stop tyring to take blood from me and just look at Isaac's results which should come through in about 2 weeks. She wasn't too hopeful about finding a link between Isaac's genetics and Malachi's though which I wish I'd known before letting Isaac have the blood test. Also the geneticist has gone off sick and so our appointment will probably be in April next year which seems a long time away.
Wednesday, 2 November 2011
Wednesday, 26 October 2011
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.
Monday, 24 October 2011
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
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
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
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
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
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.
Friday, 30 September 2011
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, 26 September 2011
The carnival was brilliant. Jeremiah loved every minute. I think this is the first year he has been old enough to appreciate it. Isaac loved the fire engines and he fell asleep near the end. Malachi slept through some of it too.
Friday, 23 September 2011
They do this quite a lot but I've never managed to get a photo before. All three of them get on really well mostly and Jeremiah and Isaac love giving Malachi cuddles and singing to him which is lovely. We're having a quiet day today. Getting on with the housework and playing with the little ones. I've noticed that Isaac will play quietly for ages with Malachi when it's just the 2 of them at home but as soon as Jeremiah gets home he suddenly gets more lively and wants to join in with whatever Jeremiah is doing.
We still haven't had the forms for the chromasone testing yet. I just want to get it over with now, preferably when Simon is off work so he can come for moral support. I phoned Nicola yesterday and she is going to chase them up for me.
It's been a fairly quiet week this week, but then I think we've needed it. Wellington Carnival tomorrow which should be fun. There is always a big party atmosphere while we wait for it to start. I wonder what Malachi will think of it. He loves music but it can be a bit loud. I think Isaac will appreciate it more this year now that he's a bit older. We've got folding chairs this time so no more standing around.
Monday, 19 September 2011
Wednesday, 14 September 2011
Tuesday, 13 September 2011
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
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
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.
Monday, 5 September 2011
Friday, 2 September 2011
I need to move Malachi out of the moses basket into the cot. He still fits it it fine but I'm hoping that having the room to roll around will encourage him to do it more. It's kind of sad though, knowing that when I put the moses basket away it will be for the last time. I've washed the hood and the lining so it's all ready for the final photo. I thought I'd buy some new bedding for the cot as the stuff I've got has been puked on and washed so many times it's looking tatty now. When I looked on the mothercare website I was quite shocked at how expensive everything was. £22.99 for a cot blanket! Babies r us were charging similar. I'm going to look on ebay.