Jamie

Update

2010-05-08T22:35:00.002+01:00

We have not been updating the blog for a while, partly due to being busy and partly due to Jamie's age. Jamie is quite capable of reading and therefore we did not feel it was fair to document everything in a place that classmates could access.

Jamie changed schools in late January after our trip to Switzerland (he loved the modified cardboard box, deep box on snowblades). Jamie's new nursery started him on the Oxford reading tree books at stage 5 to assess his level - he started at stage 5 in March so he could be introduced to the characters. Two months later and he has reached the end of stage 7 - we get a new book every couple of days. Jamie is limited both by his slow speech and the need for sips of water every couple of pages. He clearly reads faster than he can say words out loud and is currently about half way through year2 - we have pre school nursery, reception year (he will start reception in September this year), year1 then year2.

We have an new standing frame and walker. Jamie had a new hip xray and this time the staff knew what they were doing and the result is a little better. Both boys were ill during April and we had a horrible Easter. We get no therapy input from the hospital team as the sessions clash with horse riding but Jamie still goes to Smiley Steps.

Isaac has lots of new words and a few phrases including the accurate 'a mess' after he has eaten! He got asked by a cashier if he was a monkey and replied 'ook ook'.

We exhaust ourselves from time to time at soft play - pick up child, climb to top of big slide, go down big slide, repeat for another hour and a half. Antony has to make snacks all day as at mealtimes Jamie is eating his food then declaring 'want some of yours Daddy'.

We have obtained planning permission for the garage to be converted into a much needed wetroom and downstairs bedroom but our next door neighbour sent us a solicitors letter to do with covenants on our estate so we cannot build it yet.

We are replying to emails and we are both on facebook.

Happy Birthday Jamie

2010-01-06T21:37:00.002Z

This is the lovely cake that Taryn made for Jamie's 4th birthday - Jamie and the kids at his party really liked it and it was very yummy :-)

4 today!

2010-01-05T21:31:00.002Z

Jamie turned four today and he loved seeing his friends. He went to Smiley Steps this morning and we took a little cake, then late afternoon/early evening we had a party at the local soft play place with a beautiful Bob the Builder cake made by Taryn.

Different scales

2009-12-29T23:48:00.002Z

We took Jamie to the local hospital today and he had a standard weight and height check, this time he weighed 13.7 kilos (much better if this is accurate) and was over 94cms (just a fraction longer). They were a little confused by me saying 'he cannot sit' as the scales had a chair, he ended up balanced precariously as he is too long for baby scales. He had an x-ray (and he and Antony saw the picture after so he did not mind) . We are trying to get him tested as we think he has some food intolerances, blood tests are next, won't be fun trying to straighten his arm and keep it still.

Jamie is quite strong, yesterday he was trying to extend and we tried to stop him and it takes a lot of energy. Don't go to the gym for toned arms, just play with Jamie for a bit.

Smile

2009-12-20T22:41:00.002Z

Jamie likes to makes us laugh if he can and he has been repeating a comment he made to Vicky recently 'I am not 21 and I am not a liar!' Vicky has been claiming for several years that she is still 21 and Jamie had taken to saying 'Auntie Vicky is a liar' if he heard her. To be fair, Vicky gets asked for ID a lot.

Colin has been upgraded to a piece of furniture in Isaac's eyes, he sits on people he is comfortable around (when he is not climbing / running / hiding in toy boxes).

Antony took Jamie to London for an eye appointment this week. He had to convince them to test Jamie with letters rather than pictures as he cannot always make sense of the line drawings but loves reading. New glasses soon when we get out with the prescription - maybe after Christmas? Jamie's last day at nursery school this term ended up being Tuesday (as a shepherd) as school was closed Friday. He also had a party cancelled on Saturday and a hospital appointment postponed.

Our boys have seen snow and are not put off. Switzerland next month!

Bye C2

2009-12-11T16:07:00.002Z

If you visit there will be room to park, Antony sold our C2 this afternoon. I am a bit sad as I loved driving it, it just wasn't practical with two children. Hopefully whoever buys it from the dealer will use it - since I left work we have not needed the car.

Lost weight :(

2009-11-30T13:44:00.002Z

We saw the consultant for a routine appointment today and Jamie was weighed and measured. He was 93.8 cm short (he is officially of short stature). Even though Jamie was wearing thick winter clothes and only took off his shoes, compared to the summer when he was not wearing much (vest & shorts?) he has lost weight. The consultant was not bothered by Jamie's weight today as he is still on the chart but in June he was either 12.9 or 13 kilos whereas today he weighed 12.4 kilos. Not a surprise as I thought I could feel his ribs more but Jamie cannot afford to lose weight.

We took the boys to see Santa yesterday after a ride on little train. Jamie spoke to Santa but Isaac took one look, cried and ran off! He was okay last year though.

Chocolate

2009-11-25T12:34:00.003Z

Disaster! It seems that both our boys are allergic to chocolate - particularly the type of chocolate that they mould into shapes. Jamie seems OK with chocolate biscuits, so it must be something to do with the way they make it into shapes. Any ideas welcome!

Whizz-kidz

2009-11-18T21:08:00.003Z

We were in Canterbury today to meet a couple of people from Whizz-kidz and for Jamie to try a couple of posturally supportive buggies that it is possible to:
a) lift
b) fit a buggy board to
c) push easily
d) take over terrain that is a little bumpy.

Apparently it costs the charity £2000-£3000 per buggy and we plan to give them a donation towards this. They only meet you if funding has been agreed so in effect our donation will help the next person on the list. In a couple of years it may be possible for them to provide Jamie with a wheelchair he can control with his head - the lady we met noted his good head control and said she likes children to be able to be naughty and 'run' off from their parents. (Isaac was running all over the place and rearranging toys and chairs and climbing into unused buggies at the time.) It should be ordered next week and we are hoping to get the buggy within a month. Hopefully the NHS wedges for our double buggy will come soon as Isaac is a bit small to stand up for long periods - he is always moving though.

Things Jamie has recently found funny:
Cars splashing in the big puddle on the corner near us.
Snowboarders / skiers in the half pipe (guess if they will twizzle or splat).
Me having to chase a balloon across the grass - don't accept free balloons if you are out and it is windy!
Trying to say goodnight to me with hiccups: 'night night hic', 'night night night hic', night hic' 'night night Mummy'.

Fireworks

2009-11-13T10:23:00.002Z

Vicky found this:

www.heartkent.co.uk

Changes

2009-11-12T16:48:00.003Z

I have come back from having lunch with my soon to be ex-colleagues as my office closes today. Jamie has been telling me the French words for the days of the week. When he transfers nursery in January he will go for 3 then later 4 days a week as he cannot go Thursday afternoons as he has French.

Our garage was measured this week, it is officially too small for a car and draft plans are to be submitted for the bedroom / wetroom for Jamie. The people that came round commented that the C2 was parked in a reasonable place and that it would be possible to get a large lorry through the gap - our neighbour has asked us to move it before and she drives a small car. We only have a small strip of grass at the front but we may have to lose a foot or so to make the drive technically large enough for 2 cars.

We are taking Jamie to be measured for a wheelchair on Wednesday. He has reached the top of the queue with the charity Whizz-kidz. The hospital are apparently still making the wedges for the double buggy and Jamie does not have a current referral so it is unlikely he will have an NHS wheelchair before this time next year even though he will need one for school in September.

Some good news

2009-10-19T22:30:00.003+01:00

1. We have finally got a statement of special educational need for Jamie and the only error was on the covering letter.

2. We went to the other side of Maidstone to visit an accessible roundabout yesterday (the same as the Park Leisure one I found in Farnborough). Jamie enjoyed the roundabout and the location was lovely but it was a long drive and there was nothing else there for him. However Jamie's grandparents live in Rochester and we understand there will be a roundabout installed in a new park there so he will be able to use that in the future. It is really good for him to do things little children enjoy (although J is quick to point out he is a big boy now).

3. We had an unexpected visit today (we did not get the answer phone message so we do not know who did) from the social services OT and someone else who look into disabled facilities grants. I was taking J to school (he relented and let me, I am okay normally but he likes Antony to take him to school) so Antony showed them around. When I returned they had nearly finished but did say we should have an architect round in a couple of weeks and they expect that if the work goes ahead it will be in this financial year. We had fully expected next financial year - we have a LOT of clearing out to do! Maybe I will have to do without a bicycle, we do not know where we can store Antony's bikes when the garage is converted.

Party

2009-10-12T21:47:00.002+01:00

Thank you to everyone who came to our party on Saturday, it was lovely to see you all. A big thank you to everyone who helped or contributed food or drinks and to Lucy who sorted out my make-up. We would like as much energy as Alexandra who danced every dance until 10.30pm when her parents left. Jamie refused to leave early with Isaac and was up until after midnight - he had a long nap this afternoon after school.

Feed Me!

2009-10-04T13:41:00.001+01:00

Isaac's really getting into sharing - he sometimes feeds Jamie for us which is quite cute, as well as being really useful!

Broken

2009-10-01T22:00:00.003+01:00

I am currently very upset that Jamie's walker broke on Monday night as Antony was putting it in the car for Jamie's therapy session on Tuesday morning. We are not sure that we will be able to get it sorted out quickly and we really wanted to take it to the hall when we have our party next week - J is getting quite good in straight lines.

Isaac is becoming more independent, he wants to feed himself now and this is the result:

Not that bad after all

2009-09-26T21:29:00.002+01:00

I cut Jamie's hair this evening to the usual cries of 'I don't like it' and Jamie saying 'Daddy help' and me replying 'Daddy is the one holding you still'. Jamie got Isaac upset so he cried too. We then sat Isaac on Antony's lap to cut some of his hair and he stopped crying as he realised it was not so bad and Jamie was making a lot of fuss about nothing.

Antony survived the Dad and toddler group today while I got to clean in peace. Isaac likes the dustpan and brush (wave them about a bit then open the bin lid) and the dyson and he always manages to be the source of crumbs then later be sitting on the bit of floor that most needs cleaning.

Party and play

2009-09-17T21:46:00.002+01:00

Yesterday we had another quick look at the hall where we are having our party next month. Isaac had great fun running around and tried something we had not seen him do before, backwards commando crawling. There will be enough room for Jamie's walker so beware if you are coming, we have to lock the wheels so he can only go in straight lines and once he has started he keeps going until he hits something!

We are planning to take a few toys to amuse the children until everyone else turns up. On the following morning we will probably head over to Brogdale to the Faversham Miniature Railway when they open at 11am - if enough people are interested I can book with them so we get unlimited rides. We can offer a simple lunch afterwards if anyone wants to come over but be warned, if Isaac is awake we are not going to be tidy!

Playgrounds are not inclusive (well, not if you are as disabled as Jamie) but all children like to play. We have the difficulty that we go to one of two local parks to take Jamie on a swing, or we drive to Shorne Woods Country Park to take him on the slide (as it is big enough to take adults holding a child) but he cannot go on the swing there easily - he cannot sit in 'baby' swings (Isaac can manage the grown up ones in contrast). When visiting my parents in Farnborough recently we went to the playground off Sycamore Road and discovered the Kidabout by Park Leisure, an inclusive roundabout, Jamie LOVED it and it was good for me as I did not have to hold him, you can lock the buggy/wheelchair and other children played with him. (They have an 'inclusive' range but Jamie could only manage to play on two of the items and he does not really like the wave swing.)

We do not like the fact that Jamie can maybe use one item in a playground, it would be good if he could go somewhere, even if we have travel a way, to use a swing AND a roundabout AND a slide on the same day.

If anyone knows of any inclusive equipment, please could they add a comment / email us to let us know what it it / where it is located.

Busy

2009-09-09T20:55:00.002+01:00

We are very busy still and have not had a break from appointments over the summer. I also had to work over the summer but will get another winter off when many places to visit are closed. The health visitor came today, Isaac is now 11.24 kilos and 81cm. Jamie is about 93cm and probably still about 13 kilos. Isaac is in the 75th centile for weight but 91st centile for height so even though we think he is chubby he is tall for his weight, just like the other males in the house. Babies are supposed to be about three times birth weight at a year so Isaac is a bit behind being three times birthweight at 13 months. (Jamie was about ten times birthweight at a year!)

I am getting a little upset that we chose five letter names for our children that people get wrong. The nursery spelt Isaac with two 'S' and only one 'A' recently and some people insist on calling Jamie by the name James no matter how many times we correct them - it confuses him and is not his name.

Walking

2009-09-07T23:02:00.002+01:00

We took the boys out yesterday and Isaac was helping Jamie by pulling his walker along - he is a bit small to do that and he has not really been walking long enough himself. Isaac did really well on Saturday walking around Wildwood. Polecats were Saturday's 'funniest thing ever' according to Jamie. It is very hard to find accessible places but Wildwood was good - most places assume limited mobility but that you can sit and do not like to venture too far. We do not like being restricted to short walks, for example, in country parks so we use either the bugaboo or a backpack but we will be really restricted when Jamie is bigger. We have asked for a walker with better wheels for outdoors but we have been told that his walker is the best one for him even though it is only really designed for indoors - places like shopping centres. Designers need to consider the whole family. We are less concerned with Jamie having cerebral palsy than stupid design limiting us further.

Isaac went to nursery today and I left him after half an hour. He was screaming when I left (apparently not for long) and screaming an hour and a half later when I collected him - he was tired then and had just started. He is going tomorrow for 4 hours while I take Jamie to a therapy session, then 5 hours every Tuesday morning. Hopefully he will not be too upset, he was clingy for the rest of the day and he is not usually like that.

Ca Va ?

2009-08-30T22:37:00.002+01:00

Every so often, Jamie surprises us. We have a set of paired flash cards, with picture and words on. Today, Jamie was reading them to us. Not /that/ unusual for him, and there's a big clue with the picture, except these cards are bilingual. He was reading us the french words...

We met his new french teacher yesterday - she's really nice, and actually French, which is a bonus. We told her that Jamie know how to count to 30, and she taught him all the way up to 69 - this wasn't a lesson as such, just a settling in and paying a deposit kind of session. She also lent us a pop-up book in french which was very kind.

The LEA here have a tendency to send children with any kind of disability to the local 'special' school - they do sterling work there, with children with multiple and profound disabilities, but what they don't do is give them an academic education - they might get a couple of GCSEs across the whole year group. Hopefully the question 'How many language qualifications do you expect the children to get' might lend some weight to our demand that Jamie get the same academic opportunities that other children get (within parameters of course - I'm not suggesting CDT would be a sensible option!)

Horse riding or French?

2009-08-25T20:48:00.002+01:00

We would like Jamie to have French lessons but it turns out they are at the same time as his horse riding on a Thursday and that is the only session for pre-school children they do. Horse riding is something Jamie needs as it really helps his posture so we are keeping our fingers crossed it can be changed but he will be back at nursery and Smiley Steps soon. Talking of Smiley Steps, please sponsor Antony for the bike ride on 20th September if you have not already done so (see the link on the left hand side or email us), thank you.

Isaac has his first 'settling in' session at nursery tomorrow, we finally found a local nursery that has a place on Tuesdays. He needs to be with other children and I need to take Jamie to Smiley Steps on Tuesday mornings without him. Hopefully he will settle well and in a month or so we may be able to send him for the whole day. Jamie quite enjoyed Isaac not being here - we were a little worried he would not like Isaac being with Granny and Grandad.

Shoes etc

2009-08-24T22:56:00.004+01:00

We have not got anywhere today, partly because we had to wait ages at the hospital in the ENT clinic this afternoon before Jamie was declared fine (the paediatrician wanted him checked). I told Jamie we had to wait and he said 'We have to wait and wait and wait and wait and wait until Tuesday'. We also had a letter from tax credits saying that our money will stop as we have not renewed. We have not renewed simply because we were not prepared to lie. None of their letters turned up, then last week Antony had a call asking him if he still lived in London! We have been in this house all the time we have had children. Needless to say we were unable to get through so they got a two page complaint letter.

Isaac is staying with Granny and Grandad tonight. He has bacteria man, one of his cellular blankets and another toy he normally has in his cot. We think he has been fine apart from sitting behind the door after we had gone, waving and saying 'mummy' and 'daddy' for a bit, bless him.

We had a new experience on Saturday and took the boys shoe shopping. We ended up with kickers for Jamie, his first pair of non hospital shoes (he is supposed to be wearing his AFOs a bit more than he does). Isaac has some really cute red shoes and over the last couple of days his walking has improved. Isaac can also manage an adult swing - we found out as the baby swing at Farming World was occupied.

Oink, ouch!

2009-08-19T22:44:00.002+01:00

We took Jamie to meet Peppa Pig today. The queue was large but we managed to bypass it as someone else who was waiting saw Jamie in his walker and mentioned to the staff that she thought the disabled boy should not have to wait. Some children were staring which is expected as a walking frame is not seen often and I do not mind reasonable questions but some parents were just saying 'its rude to stare'. One child said 'what is that?' and it can help to explain it is a walking frame and that Jamie cannot walk without it. Children accept simple explanations and Jamie is very aware that he cannot walk like other children as his brother is now walking a bit. (Most other three year olds would not be interested let alone be able to give the correct answer to 'what is seven times five?')

Isaac screamed loads today and we did not know why as I was unpacking the car and Antony was feeding Jamie. We later worked out that he must have burnt his hands on the front door as he was sat by the door crying and we found blisters on his hands, poor boy - he probably tried to find me as the door was open and I did not know it was hot as I used the knob. Luckily we still had some of that 'magic' duoderm that was left over from when Jamie was tiny.

Missing or not?

2009-08-17T21:46:00.003+01:00

We have been a little concerned that some of our post has been going missing. We thought tax credits were simply being stupid, telling us they had posted letters and then duplicates and further duplicates when there may have been no letters - I did call in April, we got both copies of the letter they issued then everything else went astray even though I had confirmed MY address. The book Jamie ordered from Amazon failed to turn up so he had nothing to give Isaac on his birthday (Amazon replaced it and that book did turn up). Today Antony took a phone call from tax credits who asked if he was still living in London!! That may explain why we did not get Antony's letters but mine should still have arrived correctly. We have been getting post so it is odd that only things of value have gone - all the personal details of our family as well as the book. I hope there is someone enjoying 'Emergency!' and touching and feeling the pages.

We took the boys out on Saturday in matching dinosaur t-shirts. Jamie really likes his new dinosaur bib. He used to ask for the Harrods one, now he requests the dinosaur one.

?

2009-08-10T20:43:00.002+01:00

I was stopped in the street today by a boy who really wanted to tell me that the front wheel on the bugaboo had a puncture - I told him it did not but he insisted. Only the back wheels are capable of getting punctures as the front ones are solid wheels. I do sometimes wonder about the intelligence of some people we live near :-)

Isaac had his birthday lunch and afternoon train rides yesterday. We were joined by some family and friends for a picnic and could not have had better weather. Unfortunately we could have had better traffic - Isaac was late for his own party. The children enjoyed 'little train'; one boy liked it very much and his mum ended up spending a lot more time than she had planned on the train!

It would appear that the amended proposed statement of special educational needs covers all the points Jamie needs so we are near the end of the process we started in March. We get far too much paperwork.

Two months to go to our party. Isaac walked across the lounge on his own today, he might be walking properly by October.

Isaac and the monkeys

2009-08-07T22:42:00.002+01:00

We took the boys to London Zoo, partly due to Isaac being 1 today (the other reasons were that we could get into the zoo cheaply although the train cost £39 and children's books show no sense of scale when drawing animals). That mythical Victoria Line disappeared again so it took ages to get home and the boys were very tired. Isaac hardly slept all day as he was on the hip seat - he slept sitting up when we arrived at the zoo as it took a couple of hours to get there and when we left and walked into Regents Park but woke up when we got on the train. We take the tube but will have to stop doing so as most stations are inaccessible. Hopefully our Rough Guide to Accessible Britain will turn up (free to blue badge holders) - some post has gone missing including the book Jamie ordered for Isaac's birthday and the tax credit renewal stuff plus two lots of duplicates of that information. Isaac enjoyed his day with a couple of highlights being the playground, ripping up a newspaper on the way home, the monkeys and watching other people! Jamie liked the monkeys too.

Slide

2009-08-02T20:49:00.003+01:00

Both our boys loved the big slide at Shorne Woods Country Park. The adventure playground is meant for older children but not people quite as heavy as Antony - I ended up on the slide as Jamie needed help and Isaac is just a bit too small to go down the whole thing on his own (we know, we tried, he was not upset but had a smile when he came with me). Isaac likes going fast on slides and being pushed high on swings and is only limited as he is still short and not really walking. Children a couple of years older were refusing to go down the slide, ours kept wanting another go. Jamie was wearing his AFOs but his sandals fell off, we need to modify the tops (maybe extra velcro) so they stay on.

We collected the AFOs (ankle foot orthosis) on Thursday; as requested by us amongst the design they each have a helicopter on them. Yesterday we bought Jamie a cheap pair of wellies for horse riding as he has just about grown out of his hospital issue shoes (we have only ever bought him slippers). Shoes for small children do not have heels but wellies do, hopefully they will be okay. We got him some sandals in a size 7, about two sizes bigger than he is so they are long enough for the AFOs. Cheap trainers are recommended and we will get some when it is cooler.

Jamie's language is improving and although he does not sing for other people he sings at home now. I 'forget' a lot of words so Jamie helps me. His reading is improving a bit so he has more confidence with words. Isaac can say 'baby', 'aymie', 'mumum' and 'dadada' as well as screeching and 'raaaaarahh'.

Isaac has been making me laugh as we put cushions by the ball pool and he has been diving out head first into them. The floor is really hard so I yelled at him when I caught him diving over the other side today that he was naughty and he was to only dive head first onto cushions. He promptly did that, got told he was a good boy and we have seen him dive head first off the sofa after throwing some cushions on the floor first. Safe thrills ...

2009-07-30T21:48:00.002+01:00

Jamie's new glasses and haircut - doesn't he look smart :-)

It's handy having a 7 seat car - you can put all the little people in the back.

Moooo!

2009-07-29T21:27:00.002+01:00

Talking about yogurt today. We've got west country yogurt and I told Jamie that the grass was extra good in the west country and the cows made extra nice milk, and I suggested that cows turn grass into milk. Jamie stopped eating, looked confused and said 'not green milk.' then 'jamie drink white milk.'

We then went into a digression about cows taking green grass and taking the green out. Why isn't milk green ? How come cows aren't green ? Where does the green go ?

Jamie is

2009-07-23T18:23:00.001+01:00

'gorgeous and happy and big' in his words.

In honour of the 40th anniversary of the moon landings

2009-07-22T17:21:00.001+01:00

That's one small step for a baby, one giant leap for babykind.

We are in trouble ...

2009-07-18T16:51:00.003+01:00

... Isaac took a couple of steps across the lounge unaided, then he did it again! I am really excited to have a child who can take a couple of steps on his own. Excited and also a bit worried.

The other day I held his hands, he walked into the children's centre, then I made him climb the stairs to the room where the group is held. Isaac was fine but someone came along stressing that I must stand behind him - I had to walk ahead or he would not have gone up and he has been climbing up and down stairs for ages and although he has slipped slightly once or twice he has never fallen. (Yet ...)

We went to the church fete today to get a cake (saves us baking in this heat) and Antony paid for some tickets for the tombola. Every ticket ending in 5 was a winner and of the five tickets we got I found four winning ones!! We never win stuff and we said we would see what we had won and take one prize, they tried to give us all four so we took two in the end. I gave Jamie the last ticket that did not win and he clutched it for ages as he loves numbers.

Short!

2009-07-14T19:35:00.001+01:00

Conversation we just had:
Me 'His legs are short.'
Antony 'His middle is short too.'
Me 'Are you short?'
Jamie 'Yes. Short like Auntie Vicky.'

New glasses

2009-07-11T10:13:00.003+01:00

We collected Jamie's new glasses on Wednesday. As Jamie is now bigger we lose the small frame supplement of the NHS voucher (worth £59.70) so his new glasses cost us £104.70. Jamie was given the choice of frames the same as he has had or frames with stripes on the sides and he was very definite that he wanted frames with stripes. Part of my frames broke a few weeks back but I have not had new glasses for years as they are so expensive. I am now worried about Jamie and Isaac breaking Jamie's glasses, we need them to last as long as possible as his prescription has not changed.

Jamie had the plaster casts for the AFOs done on Thursday, we collect them in a couple of weeks and then we can go shoe shopping for the first time. Jamie is just growing out of a size 21, width 6 but with the AFOs he will need much bigger shoes.

Antony got to go on the school trip with Jamie to Farming World yesterday but they had to go in our car as Jamie was not allowed on the coach. Antony was pretending he was four as he was the only adult on the bouncy cushion with lots of children.

On Tuesday Isaac tried to destroy the therapy centre. I was going to do Jamie's therapy but Isaac screamed when I left him with someone else. He screamed at me until I managed to get some food in him then went to explore in a room that appeared safe. I took him out into the reception area and discovered the 'mirror' panels on the wall were plastic hooked over nails as Isaac pulled them off and eventually took him in the room where the children were having their session. All the children had been working really hard but our 11 month old 'bruiser' as someone described him did everything easily - crawling through the tunnel, climbing onto the trampoline, standing up and bouncing, crawling to the parallel bars, standing up and using them to walk up and down etc. I did laugh at him when he was commando crawling along a bench and fell off onto a mat - he does not cry when he falls over but just picks himself up and explores something else. He screams with hunger though - I broke a mug on Thursday as he let out a particularly loud shriek.

Fixies nappies are surprisingly good. We have tried many brands of disposables and only really got on with Pampers and our real nappies (Motherease one size with Rikki wraps). The free Fixies are possibly better than Pampers. The only wipes the boys are not allergic to are Huggies pure ones.

Why walk before you can sit?

2009-07-01T18:50:00.002+01:00

We are getting increasingly fed up by the question 'can he walk?' in relation to Jamie, usually followed quickly with 'will he be able to walk?' - he cannot sit unaided but everyone seems obsessed with walking. It seems to be taken for granted that everyone can sit so the question 'can he sit' never crops up. We also have people say 'but he will be able to walk unaided later?' when we say Jamie has a walker. He has a walker as he should be able to walk with the walker.

We are noticing how badly designed a lot of children's chairs are. Isaac sits well in anything, even when other (normal) children slump but a few tweaks here and there would mean that any child could use the equipment.

Cress v daisies

2009-06-29T22:12:00.002+01:00

Would you rather eat a small piece of cress or daisies and gravel from the garden? Isaac point blank refused to even try the cress Jamie has been growing even though he has tried many daisies and we have removed gravel from his mouth several times. Maybe we have to grow lots of cress and pretend it is off limits.

Isaac is a very healthy child - maybe eating dirt has some advantages as he is certainly exposed to germs. He screams the most in public when he is not allowed to explore but there are some places like train floors that are not good as he tries to eat anything he discovers.

Lifetime homes

2009-06-25T22:03:00.002+01:00

I have been looking at www.lifetimehomes.org.uk as our house is not wheelchair friendly and I wanted to see what is expected. Apparently all social housing from 2011 and all new homes from 2013 should be built to lifetime home standards. Having room to turn a wheelchair around means accessiblilty for those who need it and room to swing the proverbial cat (toddler?) for those lucky enough not to have mobility problems.

Eyes

2009-06-25T19:48:00.001+01:00

Yesterday we took the boys to London for an eye appointment. Jamie's right eye is doing well, his left may be a bit worse or he may not have been concentrating (he was distracted but sometimes he gets distracted when he cannot do something). We have to continue with the patches (although we have not managed to do them much recently) and as well as his six month check up with the consultant someone else wants to see him in two months as they said they do not usually leave it six months if they have patches even though they always have with us.

Jamie got home yesterday and just screamed until he went to bed so he did not get any food. We woke him at 11pm and he just wanted milk although we coaxed a bit of fruit puree in. At the moment Antony is feeding Jamie his dinner so he is making up for it today. We are not sure if Jamie screamed as we were supposed to get train number six and as it was delayed we decided to walk home from the main station, it is about half an hour walking and we got in at the same time as if we had waited for the train - and we did not have two boys to entertain as they like being pushed.

We heard this week that Jamie will have to change schools. We are hoping to keep him in his current nursery until the end of the Christmas term and then do a split placement so he can get used to the new setting but still see the children in his current nursery class. He has a year until he starts school and the school he will go to has just received 'outstanding' reports for the youngest children from Ofsted. (They have 'outstanding', 'good', 'satisfactory' and 'poor'.)

Xray

2009-06-22T21:17:00.000+01:00

We took Jamie to the hospital after nursery today for another xray on his hips - hopefully nothing much has changed. We also popped into the neonatal unit to say hello with both of the boys.

We have not yet received quotes for tricycles for Jamie but have been told they cost about £1200. We are getting upset that manufacturers use the word 'disabled' to slap a huge premium on everything. The majority of households with disabled people in them do not have a lot of money. You can get a normal child's bike for much less money, for example Islabikes do decent children's bikes and sell one for children of 4+ for £149.99. You only have to spend over £300 or so to get something reasonable for an adult so why the huge mark-up for something not lightweight just 'sturdy' with a seat with a harness and maybe callipers so that children like Jamie cannot fall off? We were told that charities usually fund equipment like this - if people/charities pay the prices asked then manufacturers can continue to charge that amount.

I am getting odd looks from professionals when I say that I use the pushchair a lot and want to push Jamie to school - it is assumed that when you get the heavy wheelchair you will use your mobility car and never be seen outside the house / shops / hospital / school. I will be wanting a wheelchair for Jamie that is not too heavy and is easy to push outside, may have a tricky time. I do not want to stick to short trails in country parks, etc and some pushchairs will go over most terrains so why not wheelchairs? (The bugaboo goes well off road, on the beach, etc.) Leaving the car at home is not really an option for disabled people, a bit of a problem when petrol and diesel are increasing in price and our income is not. Never mind, the summer is coming up and we will save money then. We get left alone in the summer as therapy appears to only be a term time thing.

Squirmy Wormy

2009-06-19T20:32:00.002+01:00

We had an occupational therapist from social services come round on Wednesday to assess our house. We contacted them in late January and had a letter a week or so later dated 6th February saying we were on the list. According to their service standards they are supposed to visit in 28 days but we had to complain to get seen this early, not something we were happy about as we don't want Jamie seen ahead of other children, we want them to employ more staff. We will have to keep our fingers crossed that the sensible thing is recommended (converting the garage into a wetroom / bedroom for Jamie) rather than a cost cutting alternative that they may try to force on us (installing a lift in our small lounge). We cannot use our bathroom to toilet train Jamie as he would need special equipment to be able to sit on a toilet (or even a potty) and our bathroom is small and has to be used by other people so the house would not work for Jamie with a lift. The occupational therapist described Jamie as a 'squirmy wormy' which he liked.

Jamie tried a couple of trikes at the hospital today. He knew what he was supposed to do with his legs but he did not have enough force to move them on his own. We may look into that later, we need to have a good sort out to find any space. If we eventually convert the garage we will need to empty it and find homes for all the stuff in there.

Today is my last day of maternity leave and also nine years since I started at the Halifax. It is odd going back knowing I will not be there that long.

Our holiday in Cullen

2009-06-11T22:33:00.005+01:00

We went to Cullen in north east Scotland a couple of weeks ago - you know, that famously sunny place where it never rains. Here's a few of the best photos:

Walker

2009-06-06T22:07:00.002+01:00

We took Jamie to a local shopping centre today, parked outside M&S as there was actually a disabled space free (helps to go out after 2pm, all the old people shop in the mornings) and put him in his walker. He had the biggest grin on his face as it is the first time he has been out properly in it. (If anyone is debating whether or not to treat extremely premature babies, take one look at Jamie in full grinning mode and that is it, decision made, it has to be done.) Jamie managed to walk round the whole store, some on his own, some with us guiding him (mainly with a hand on the back of his head, light pressure kept him moving). We were sooo pleased with him. We have to turn the walker as Jamie cannot control it when the wheels swivel but it is huge progress. He was getting tired so after that we popped him in the buggy with Isaac ... and ended up with cake for tea! (We had not realised it was late, the boys had decent meals earlier in the day and the cheapest things in the cafe were cakes that had to be eaten today.)

One for J

2009-06-06T10:50:00.003+01:00

I finally got to give blood again. I was going to try when I found I was a couple of weeks pregnant with Isaac so I had to wait. On Thursday I actually passed the test and got to give blood - I often fail nowadays but I tried taking a vitamin tablet with iron for three days before and had a lunch with lots of beef and it worked, just. I wanted to give blood again after the twins were born as someone had given blood for them but only managed once in about five attempts, this one was for Jamie. I was talking to someone who had his needle put in wrong so they only managed to get 100mls this time but last time he gave the full amount then the plaster came off so it got a bit messy. They make you drink a pint of water before giving blood now, good as it was a hot day. Isaac was well behaved but he did steal the toy I took to squeeze. Jamie was horse riding and got to try trotting.

Some you win, some you lose

2009-06-03T18:42:00.002+01:00

Ok, the good news first is that after a visit today we should be signed up for free nappies for Jamie as he is over three and not yet toilet trained. That will help as I had a phone call at lunchtime today to tell me that the office I work in is being closed now that Lloyds have taken over HBOS. I am going back to the Halifax on 25th June after maternity leave and the office is being shut mid November. We would be able to sell the C2 if I stop work but it would be sad to lose it. The C2 is lovely to drive and has a real handbrake and none of the annoying hill start assist. The grand C4 Picasso 7 seat thingy is on Motability though and comes with included insurance, RAC (we pay for AA for the little car) and tax, plus repairs.

In other news, we saw the consultant on Monday, he really likes babies. Jamie is now about 12.9 kilos and about 92cm tall. Isaac got weighed today as the lady that came to assess Jamie for nappies had scales - he is 10.3 kilos! People tell us that Isaac is long, we are wondering when he and J will be the same height.

Sun, sea and stress

2009-05-30T22:40:00.003+01:00

Jamie, Vicky and I are finally home from Scotland after a less stressful but still not easy train journey from Inverness. We sent Isaac in the car in exchange for some luggage - easier to stop it roaming around and eating random things off the floor but less fun.

On the way to Inverness we were supposed to get three trains but after having arrived in London not happy after having to stand for an hour, me with Isaac on my hip the whole way (bloody football fans going to London early) we found that the Victoria Line was suspended indefinitely - just after we had missed a train as it was full of football fans. Others were stood around chanting rude songs. Instead of the slightly awkward escalators with a buggy we ended up having to use the Circle and Picadilly lines, thereby stopping at more than twice as many stops and having to use tons of stairs. Luckily passers by helped but we still missed the direct London to Inverness train by about ten minutes. We then had to queue to change our tickets and got the next train but had to stop and change in Edinburgh, adding an hour to the journey making it eleven hours and five trains.

Today we had a twelve hour journey - we had to walk across Glasgow in the sun to change trains but this time the Victoria Line was out of action for engineering work, something that was not mentioned when Vicky checked two weeks ago. Luckily we did not have to change tickets but we did have to use steps to get to the Circle Line and again missed the last train we were supposed to get, adding another hour.

Jamie and Isaac loved the sandy beach at Cullen - Jamie liked kicking over sandcastles we had made and Isaac knows what sand tastes like now.

Random quotes from the past week include:
Jamie - 'Never shake a hippo by the hand' (don't know where that was from)
Vicky - 'I saw someone I had not seen for thirty or forty years' (even though she thinks she is twenty one and her passport says she is under forty)
Jamie - 'ding dong is missing' (after we had dropped Vicky home tonight)
Woman on train - 'have you tried melting cheese inside butteries?' (nooo, might make J put on weight though)
Vicky - 'We've forgotten the sandwiches' (she made them last night for the journey) then 'but I do have fifty butteries on me'
Antony - 'They were good sandwiches'.

Glasses

2009-05-22T23:02:00.002+01:00

Isaac seems to think Jamie's glasses are a good toy and unfortunately Jamie cannot get away and we cannot remove them from his reach or Jamie would not be able to see properly. Jamie cannot stop Isaac taking them but he should learn to say something as we cannot be looking all the time - Isaac climbs all over him too.

Jamie has been crying when he goes to bed but Isaac has been sleeping in his room for nearly a week now and apart from Jamie being upset that there is someone in bed in his room when he is put in his cot he seems to be sleeping better. There, I am in for a bad night now!

Jamie was assessed by the educational psychologist at nursery on Wednesday as part of the statutory assessment process. We knew she had the right child as she noticed he liked numbers ... again he will get a low cognitive score as he could not complete the tests as he is unable to do so physically. There needs to be a test for physically disabled people to test cognitive skills to be used alongside the other standardised tests.

Time for the gate...

2009-05-18T20:56:00.004+01:00

Nick called out today that Isaac could climb stairs. Yesterday he could manage one so I asked how many he had climbed and heard five or six ... this evening Isaac managed ALL the stairs! We have a gate at the top but a Jamie is an old style dalek we have not needed the bottom stair gate before. Isaac still needs to learn to walk without holding onto furniture.

Nick is staying for a few days and he is teaching Jamie to add up - Jamie is starting to understand. Are you supposed to do maths at three? He went to nursery today and told us he used his hands to paint a purple starfish and an orange jellyfish. Jamie made some marks on his drawing board a couple of days ago then declared 'Jamie draw a hairdryer'. When I looked at the picture I could see what he meant but if you know his random arms and hands it is impressive he can make any marks.

Jamie got his new lycra suit on Friday, it took several professionals to fit it - one was sweaty after! Jamie is only a little boy! See www.dmorthotics.com for more information but it is supposed to reduce excessive muscle tone and help to improve stability. Antony said Jamie was easier to carry in the backpack yesterday when we went round Sissinghurst - it seems that the horse riding is helping.

Toys, cake and school

2009-05-15T20:51:00.002+01:00

You give children toys and whilst they may enjoy them it is the simple things that make them happy. Isaac was desperate today to get at the yellow bowl that came with Jamie's standing frame and he emptied out the flexible bucket we throw the toys in so he could climb in and out several times.

Granny has been teaching Isaac the word for cake, not a word he needs to know as he eats everything. We have to eat with Isaac or he will want his own food, then ours, then Jamie's. Jamie is still hard to feed and we have had to give Isaac the 9-12 month shorts I bought Jamie as he is not chubby enough for them to stay up.

We viewed a local school today. It is not fun trying to decide what to do for the best; Jamie cannot go to the special school in our town as he has some intelligence but he is more physically disabled than anyone else in mainstream here. Schools that can deal with his physical needs and give him an education are further away. We were very impressed with the headmaster at the local school though and Jamie liked it. We had to look round as we found out they have a care suite, something Jamie will need when he starts school properly; they do not have one and may not build one at his current school.

Wait and see

2009-05-06T22:45:00.002+01:00

We had a meeting at Jamie's school today to discuss him and the possibility of a care suite being built there. We found out that there is one at a school not too far away that nobody had mentioned before and that it would cost £30000 to build one at his school so we are expecting it to be turned down. We may have to move Jamie out of his current nursery too to settle him at nursery in the new school if they do not build the care suite. We are disappointed we did not find out about this before and having looked at the reports on the schools today (there is another the other end of town with a suite being built) have found that the school nearer us is generally good but needs to raise standards in maths and science - worrying as Jamie is so obsessed with numbers.

Today Jamie worked out the ten times table on his own. I helped by telling him the numbers all ended in zero and the number after ten was two zero and he managed to get to one hundred.

We were also asked to collect Jamie an hour early so he is only at nursery for 1.5 hours. He will be starting to go on Mondays from next week and will have a different teaching assistant for Mondays. I don't know what Jamie thought when I collected him early but I took him to the park to go on the swings. We hope he does not think he has done anything wrong, he just gets tired. We were told that Jamie gets anxious at nursery but he is always really happy to go and is happy and tired when we collect him and he doesn't seem upset at all when he talks about class.

Pushchair

2009-04-30T11:57:00.003+01:00

We were pleasantly surprised yesterday, wheelchair services were helpful! We saw different people this time and were able to show them Isaac and they understood we needed to transport both boys. Whilst not ideal for Jamie we asked if it was possible to get some sort of support for Jamie in our double pushchair and they are going to make something. We will have to remove the support to fold the pushchair but it will help Jamie and be portable. When Isaac can walk a little way we will get a wheelchair but that may be a while as he is only just starting to pull up onto furniture. I was walking at 9.5 months but I am not sure Isaac will be walking by this time next month. We popped him in Jamie's walker yesterday and he loved it - he also likes walking holding our hands.

Blood

2009-04-28T10:31:00.002+01:00

Yes, it is time to nag everyone again - Jamie would not be here without blood donors. I am allowed to go again from next month (currently banned due to the pregnancy with Isaac) and as ever donors are needed. Jamie and I or the four of us are going to be in the East Kent Gazette as Antony did a phone interview yesterday and a photographer turned up and took some pictures. Isaac was grumpy as I woke him up so they may go with a picture of just Jamie and me.

Anyway - if you are capable, give blood. You never know when you may need it but you would expect it to be there if you did. I have given blood since I was 21 and think everyone should try.

Little engines

2009-04-26T21:48:00.003+01:00

I took Jamie to have a ride on the little train today and he got to sit in two of the engines! It was quiet when we had finished our ride and Jamie was watching the engines when he was told he could sit in one called Lady Fiona. I was talking about another engine when Jamie overheard and declared 'Jamie sit in Kirsty' so he got to sit in that engine too. The track is being extended at the moment so the ride will eventually be longer. The trees were all in blossom, it was lovely to ride through the orchard today.

Trouble

2009-04-22T20:48:00.002+01:00

Isaac can commando crawl, quickly. He is ahead of Jamie physically in every way now. He has not learnt any French yet though ... Jamie is interested in learning French, particularly the names of the numbers. Pity I am rubbish at languages.

Jamie is going horse riding again tomorrow with his grandparents, then being dropped off to meet us at the hospital as he is being measured for his lycra suit. He should get a new one as the old one is too short. The current suit has a label inside with Jamie's name on - they are individual. The last one was made to accommodate the real nappies we use at home as they are more bulky than the disposables we take him out in but every time he wore a disposable the zip between his legs popped undone as disposables swell up.

Every time we meet people who live in different areas we find provision for children with the same condition is very different. We are unlikely to move but if we do we will need to look into services at different postcodes.

Good news for Jamie in the budget today, disabled children are getting extra money for their trust funds.

Creatures

2009-04-17T18:51:00.003+01:00

Yesterday Grandad Frank (previously Creaky) came to help me take the boys to the local children's centre. There were creatures to touch including a big snail, a cockroach, a millipede (Jamie will tell you it has 300 legs - he was the only child allowed to feel the tickly legs), Jerry the rat, Semi the albino milk snake and a bunny called Fudge. There was also a tarantula to look at. Jamie liked Jerry the best.

Granny and Grandad ordered a Maclaren buggy in the end - it is narrower than our other one which is good, loads cheaper than the Phil&Teds and easy to push although Jamie needs help to keep his feet in the right place. He slumps still but not quite as badly as in the Aria one. Hopefully if we can get some support sorted out his legs will be okay - we need something to keep his bottom back. The clips are hard for me to undo which is good as Isaac won't be able to undo them. Maybe Isaac will learn to walk before Jamie outgrows it.

Isaac has just pulled himself up from the floor! Just now. He can already walk sideways holding onto furniture and stand holding just one of my fingers. The most useful skill is sitting - he can use normal highchairs and we do not have to lie him on the floor / cart huge pieces of equipment around for him. I am very proud that I managed to take the physio chair out the other day and dismantle and assemble it all on my own! (It does weigh half of me - three engineers, including Antony have previously struggled with it.)

Shock news

2009-04-14T21:56:00.005+01:00

There is a company that designs wheelchairs that don't suck ! Check it out:

There website is here - prices start at about £2250 which isn't much more than the crappy things the hospital offers.

Smiles at Bewl Water

2009-04-13T23:22:00.002+01:00

Took the boys to Scotney Castle today for a cheap day out - unfortunately everyone else had the same idea so they closed it :-(

Went to Bewl Water instead - the boys quite enjoyed the playground and the walk along the reservoir. Jamie wanted me to push him 'down the grass' in his buggy - it was about 40m long at 45 degrees ; after the third time he asked I had a go but it was a bit of a nightmare getting him back up. Letting go wouldn't have been sensible :-) We also met another little boy with cerebral palsy - was nice to meet someone else in the same boat who was brave enough to take their child out and about.

Here they are on the swings. Isaac smiles more the higher he gets.

Getaway car

2009-04-13T22:51:00.004+01:00

Quick Jamie, you do the clutch, I'll get the gears:

Oh no! We've been rumbled !

Egg hunt

2009-04-10T19:35:00.003+01:00

We took the boys to an Easter egg hunt today. Not many of the Smiley Steps children turned up but there was a huge crowd from the Harley Davidson club (about 100) riding to CPC - they donated loads of Easter eggs for the children as well as collecting money for the centre. Jamie liked seeing the motorbikes and one lady let him sit on hers - we did not have a camera but she did so a picture may get forwarded to us. I took Jamie to the front to show one of the children who uses the centre and ended up saying a few very unplanned words to everyone which made Isaac (at the back) look round.

Jamie normally wakes up last but we were woken by him before 7am saying 'Jamie in big bed, yeah, okay' so we had to have him in with us for a bit. We had lunch out and Isaac sat on a bench seat with no help for lunch then I put his socks on with him lying down, turned round for a second and then he was screaming under the table! Neither of us saw him roll, he was so quick. He likes launching himself off things, he will learn one day I guess. Earlier he went head first off the sofa. Curiosity will lead to bruises.

We have now booked a hall for our 10th anniversary in six months time, invites will be sent when we figure out what we are doing. We tried to get the band that my cousin had for her wedding but they are abroad then.

Horsey Horsey

2009-04-09T21:22:00.005+01:00

Jamie had a go at riding a horse today with Granny and Granddad - one of the mums at his hospital group said that her child had found it very good at improving her balance and coordination. He rode round indoors to start with, then they took him outside for a trot round.

He got tired quite quickly, but enjoyed the experience and apparently really liked the horse. The most important things apparently were the fact that he had to wear a hat, and that the horse was called Vinnie :-) Hopefully he'll be able to go every week or two; the riding centre are brilliant with the disabled children (and adults!) and charge as little as they can possible get away with.

At one of Jamie's other groups, one of the children asked him if he was going to stay at Granny and Grandad's house, and he said 'yes' - this is a bit of a breakthrough, as he doesn't normally speak to other children. Hopefully he'll be able to get a teaching assistant at nursery so he can do a few more days there, which should help with his socialising.

Gates

2009-04-07T20:39:00.002+01:00

We have had to put up a couple of gates as Isaac is really good at rolling now. He is just like Jamie, always on the move.

I took the boys to the swings today. Since the snow we have been able to get the double buggy into the park as one of the gates was replaced for a more accessible one - I had to point out that a swing had been put there for Jamie but we could not access the park and neither could anyone in a wheelchair / with a double buggy.

Antony and I got to enjoy the mountain bike trails at Bedgebury while the boys fed the very hungry ducks with Granny and Grandad on Saturday. On Sunday my family met us at 'little train' and the boys had a couple of trips. 'Barry Grandad' as Jamie calls him said Plumleigh Station (the train runs through the orchards, halting at the plums) when Jamie was on his lap, then when Jamie went with Nanny he told her the name of the station before she had noticed the sign.

Jamie is going to try horse riding on Thursday, his Granny and Grandad have been in touch with a centre that does riding for the disabled and they currently have a space as someone else is over the fifteen stone weight limit. (Antony plus both boys would weigh just under that although Isaac ate soooo much lunch today I thought he would pop but he simply has had no food since.)

Weigh in

2009-04-03T17:59:00.004+01:00

Jamie finally got weighed at the hospital today - the doughnut diet seems to be working as he is now 12.7 kilos.

Jamie loves Chuggington on Cbeebies and he is trying to spell the names of some of the trains. He is starting to read some words and he declared this evening 'yellow mat Winnie the pooh at squirrels, yellow mat lots of colours at home' for the changing mats - squirrels is the hospital group.

We have got a copy of the Epicure report and they have said his intelligence is clear but we were told he would score badly on the cognitive scale as he has limited dexterity. (Some tasks involved building towers for example which are impossible without help for J.) Jamie scored in the 66th pecentile for language which is average but below average scoring in the 0.1 percentile on the cognitive scale! Jamie is clearly better than that but the tests are for children who can use their arms, hands and fingers.

Car seats

2009-03-29T20:34:00.002+01:00

We met Antony's parents at their local toy superstore to get a car seat and look at pushchairs. We ended up with a new car seat for Jamie as the one that swivels does fit in our car - we had to get the shop to try it as the manufacturers do not answer emails. Isaac is now in Jamie's old car seat as he large - Jamie was about 18 months old before he needed a bigger car seat.

The Phil & Ted's sport buggy is too flimsy for Jamie so if we get a double it looks like it may have to be the vibe. WHY is it that you have to pay so much?? The bugaboo gecko we have seats Jamie well (the best seat we have found on the market but very expensive) but Isaac is not yet able to use a buggy board - I am not sure I want Jamie sitting badly for much longer. We currently have a mamas and papas twin aria buggy which is awful for Jamie but ok for Isaac who sits beautifully in anything.

Isaac has really taken to rolling and moving about the place now and he has been able to stand against furniture for ages and he takes steps if we hold him up. Isaac is also pulling himself up a bit on furniture since he found out this week he can get about. We will have to get everything up high unless he is like his father - then we will have to put everything in the garage. Antony does not like the towel radiator as he thinks it will be a ladder ... we may have to get stair gates up too.

Apple

2009-03-25T20:06:00.002Z

Jamie declared this afternoon 'Jamie want apple' so I told him that I did not have any (meaning puree) so he declared 'Jamie want weetabix'. After eating his weetabix at 4pm (we were told he two for breakfast instead of the usual one) I said he could have pieces of apple as I had just bought some. Jamie managed half an apple cut up, even eating almost all of the skin which is a bit of a breakthrough for him. It might have helped that I ate the other half with him.

I took Isaac to be weighed today as we need a new car seat for him as he is nearly too long for the straps on the old one but we wanted to check his weight - he is able to have one as he 9.16 kilos. I do not know how they expect a child of up to 13 kilos to fit into his current seat but as the next seats are from 9 kilos it is not a problem. We will probably end up with the newer version of the seat Jamie has - we had thought we might give Jamie's seat to Isaac and get one of those Axiss seats that turns 90 degrees to help us with Jamie BUT they do not appear to list any cars they fit into. A google search found other people wanting the answer so I have sent a message to the manufacturers to ask if it will fit in our car. Who is going to pay about £200 for something that may not fit? 'Normal' seats are half the price. 'Special needs' seats (basically inflated prices because they are for the disabled) that turn 90 degrees are about £800. Where are disabled people supposed to get all their money from?

Isaac started rolling over properly today so we will have to watch out. He is getting into exploring ...

Shapes

2009-03-24T18:56:00.002Z

Jamie surprised me yesterday afternoon in the way he was working out problems - I had muddled up the numbers in his shape sorter clock and asked him if the number at the bottom (2) was correct. Jamie said no then looked at the other two squares to decide which one should go at the bottom - he muttered 10, 6 then said '6' confidently.

Isaac is getting on well physically - so well he is showing us how bad the disabled children are - we don't have much contact with 'normal' children. On Friday at Jamie's hospital group they were trying to get the children seated (most with help) and clapping for example. At the end Isaac just sat on the floor - he sits so well people think he is older - and clapped while we all had drinks. Everything is so easy for him.

I took Jamie to Asda yesterday while Antony took Isaac to the dump (don't worry, we still have Isaac). I was able to use the bugaboo as I only had one child and the greeter said Jamie was sitting much better than usual. We desperately need a double buggy he can sit in.

Definitions and other annoyances

2009-03-20T21:17:00.003Z

Going by the title you can tell I am not happy tonight. I am having ongoing problems with Orange since I tried to ditch contract for pay as you go. This year I finally got hold of them only for them to send the new sim to our old address - that was after the old handset broke and the staff in the local shop wouldn't sell me a phone so I bought one with £20 credit. I finally got the new sim and got transferred to pay as you go but they have not put any credit on the phone (and they told me they would as I got charged more for their error), not even the £1 they sent me a text to say was on there so I could not call customer services as it costs 25p from a pay as you go phone. I rung from my 'other' number (I am planning to use the credit then stop using it) but obviously got charged 25p then they cut me off! There are other details they got wrong so they will be getting a letter. I am not topping the phone up unless it is sorted or I change networks.

Yesterday I was reading one of the many documents that is sent when you request a statutory assessment for your child and was not amused to find that 'learning difficulties' is being used for both children that find it hard to learn AND children with physical disabilities. Jamie does have special educational needs but has no problem learning stuff. When I did Camp America (many years ago now) they were saying mental handicap but we were told over here to say learning difficulties as we were not allowed to say mental handicap so I always associate that with people who are not so intelligent. Just because people with physical problems need help that does NOT mean they are thick so why this label?

Jamie was having his nappy changed Wednesday and starting saying 2, 4, 6, 8, 10, 12 etc and when I asked what he was doing he said 'even numbers'. I asked what the odd numbers were and he got as far as '1, 3, 5, 7, 9' and we had not even talked about numbers for days.

Big 10 Party ?

2009-03-17T21:18:00.002Z

We're thinking about having a party to celebrate our 10th wedding anniversary on October 10th. We've been struggling to find a venue, but we think we might have one now (fingers crossed) otherwise it'll be a gazebo in our back garden and about 5 guests max (bring some turf too)!

If you fancy coming, drop us an email or find me on facebook so we know roughly how many people we might expect. There'll be a bit of grub and maybe a ceilidh if we can find an affordable band. his year. If you know a band that might be suitable, do let us know, otherwise Phil, you'll need to bring your accordion along, and I'll need to ask dad to bring his assortment of plumbing equipment to be handed out to anyone not dancing...

Our ents manager has a reputation for organising fun, but unexpected venues so we'll see what turns up...

Jamie wants a P A R T Y :-)

Fly

2009-03-14T09:18:00.004Z

Smiley Steps have asked for contributions from parents towards the sessions, something they have not done for the last 19 years but sensible given the current situation. The thing that surprised us more was the flyer (printed with high quality photographs) asking for boxes of tissues, toilet rolls, washing up liquid and washing powder. Hopefully the ink cartridges for the printer are donated as a cheap version of each of the items could have been bought for the same cost as printing a flyer for each family. Costs of printing can be quite high - we know as we need to look for a printer.

Jamie is trying to open the cupboard where the DVDs are kept (he is after Bob the Builder) and Isaac is tipping his drink of water over himself - he wants cups not bottles more now but tips them over.

We are allowed to take Jamie on a plane, we checked as he was on oxygen until he was nearly a year but as he has been off it for over two years with no problems the hospital have no concerns. Not sure if we will fly to Scotland but it is certainly quicker for the boys.

Prem babies in school

2009-03-13T20:33:00.003Z

The BBC have reached the startling conclusion that over half of pre-26 week prems struggle at school - given that only a quarter escape disability, this isn't /entirely/ surprising !

Here's the article:

news.bbc.co.uk/1/hi/health/7935493.stm

Silly baby

2009-03-09T21:58:00.002Z

Jamie laughs when Isaac laughs, he even smiles when he sees pictures of Isaac smiling. Isaac is a silly boy, he started commando crawling backwards today when he really wanted the toy in front of him! He screams the whole time as he cannot understand why the thing he wants is out of reach. Somehow he ended up under the chair - Jamie has taken to commando crawling under the chair or stool intentionally.

Groups and Wedding

2009-03-08T10:49:00.003Z

We took Jamie and Isaac to the hospital on Friday as the sessions have restarted finally. We saw the dietician who answered the question I have not been able to get an answer for on the internet - how much should Jamie drink. Unfortunately her scales have not turned up so he could not be weighed (they put that on his notes as a priority) but using a good estimate of 12 kilos she said 1100mls per day. I wanted to know as when he is sick he has literally refused drink and I was on the verge of taking him to hospital to get liquid down a tube. We now know Jamie drinks just under half of the amount he should on a good day. They were talking about thickeners for drink but as he is chesty and on antibiotics at the moment we think that is why he is finding it harder.

We were also told to give Jamie full fat milk on his cereal - he likes our milk on cereal even though he has toddler milk the rest of the time and the amount of milk you have on one weetabix is not large. I will have to check the milk in the supermarket as I just tried to check calorie content and one place said full fat milk was 60cals per 100ml, another said 66cals. They also vary for semi-skimmed but we will use the figure of 49cals per 100ml as I got that figure from the bottle in the fridge. The toddler milk has 67cals per 100ml, I might use that for Jamie's cereal as I don't buy whole milk. We carried on with formula for two reasons - Jamie does not eat a large volume of food so extra vitamins could be useful and it meant we didn't have to buy whole milk and throw some away. They also mentioned family food and were pleased Jamie eats our food even if we have to purée most - don't know why they are happy as I would never use anything like cream in savoury food. Luckily Jamie does manage whole doughnuts.

Isaac liked Jamie's group at the hospital as a couple of other babies were there with older siblings. Next week will be the same at 10am but after that the group is at 9.30am. Jamie will not like that as he does not wake up early.

Yesterday we went to my cousin's wedding and the boys loved it. Isaac refused to have a nap and only slept in the car when we left just after 9pm, he loved the live music. Jamie enjoyed joining in with the dancing but my arm is still feeling sore! Jamie had a go in his walker as there was enough space in the barn. Isaac did need his spare trousers towards the end of the day - the reason I chose my dress was that it would be easy to clean. I have a lovely skirt that would have looked much better but having a baby it was flat shoes and be practical. We also visited my Nan in her nursing home. Jamie was very good this time but Nan decided she was not going to wake up and did not know who we were. Apparently some days she is fine, others not. We changed the really old picture of Jamie in her room and left one of Isaac too as she might want to look another day.

Sad

2009-02-26T18:24:00.002Z

Jamie is no longer going to have a Thursday session at Smiley Steps due to their current financial problems. We were told on Tuesday that his sessions were not affected but that all staff are now working a shorter week - it would now appear that this includes the conductor. Only three of the five children that go on Thursday afternoon are having less therapy as they are the ones that have two sessions a week.

Cerebral Palsy Care had a relaunch yesterday and were on Meridian news. The new website is www.cpckent.org and the video is on facebook. The relaunch happened to coincide with the sad death of David Cameron's son who had cerebral palsy and therefore got press coverage for the centre. The death of any child is very sad but I was very upset yesterday, probably as we have already lost a child and have another with cerebral palsy. It is impossible to describe how you feel when you lose a child and we know just how special 'special' children are.

Eye patches

2009-02-25T14:24:00.002Z

Jamie has started to request that he wears his eye patches and tells us which colour he wants. We have started making pictures of fish with the used patches and Jamie knows where he wants to stick the patches and that he must wear a patch first. Granny and Grandad have a different 'eye patch art' picture at their house.

We just had a meeting at Jamie's school. Unfortunately his one to one support lady will be leaving so he will continue with Wednesday afternoons until a replacement is found and then he may be able to increase his sessions. There was talk about him starting to go on Fridays soon but if the new helper can manage Mondays that may fit better with other appointments. Eventually we would be hoping to send Jamie to nursery on Monday, Wednesday and Friday afternoons. Jamie had a really big smile on his face when he went in today as he really enjoys seeing the other children.

We had hoped that if Jamie went to the school nursery and was accepted by the children that he could continue into the school if there was a place when the time came. Unfortunately the school have to have a care suite built if he is to go to school there. We assumed this would mean a disabled toilet but it would have to include a hoist and a shower! Jamie is only ten minutes away from home and could come home for lunch if necessary so we don't really understand why a care suite is needed but it seems that is the rule for school age children. The school are looking into what is involved so it may be possible.

Anyway, must get ready to collect him.

Big bed, Hah!

2009-02-23T13:06:00.002Z

Thank you to everyone who put us up and fed us delicious food recently. It was good for the boys to spend some time with other children. Jamie particularly liked Alexandra (and the cuddle she gave him), 'Emily funny' and being put in the superkingsize bed (like ours at home) when he would not settle at night - we heard 'big bed, hah!' a couple of times over the baby monitor. Isaac really liked Alexandra and Andrew - he is good at entertaining babies. We took pictures of bacteria man in most places and when Isaac would not settle we gave him bacteria man and he looked really pleased.

Not so chubby

2009-02-05T12:35:00.002Z

Isaac got weighed and measured today, he is bigger than Jamie was at one year even though he is 26 weeks today. Isaac is our chubby child but he is in a higher centile for length than weight, 91st centile for length and above 50th centile for weight. (8.24 kilos, about 18lbs 2oz and 71.5cm, just over 28 inches.) Jamie is about 90cm now. Isaac will grow out of his 6-9mth clothes soon, Jamie is now in 2-3yrs.

It will be good to have a 6 month old on Saturday but that will also be 3 years since we lost Tom. It is lovely for Jamie to have a brother - even if Isaac does like eating socks.

Gurning, going, gone ...

2009-02-03T21:59:00.004Z

In the style of 'Charlie and Lola':
Jamie: 'I have this little brother Isaac, he is small and very funny' ...

Jamie tried to spell brother, he got as far as 'br' so I said 'o' then he declared 'f'. He was ill at the weekend, projectile snot and everything. We have come down with the sore throats etc now. The bigger car is a huge problem when your child is ill, you cannot wipe noses from the front seat. Also fairly recently when in the little car my coat was in the boot and it started raining loads on the way home - I just reached into the boot for my coat(from the drivers seat) so I did not get wet. The main roads here are clear but our road gets a bit icy so I have been taking the buggy to the shops - the bugaboo can cope with any weather luckily.

Car & meeting

2009-01-28T22:27:00.004Z

We have had a bit of a hectic day, collecting the new car this morning, trying to feed Jamie quickly (not possible with his choice of lunch, he likes to chew everything properly) and literally running part way to nursery which Jamie thought was very funny (I had to come back for his bag after we had got onto the main road). Antony tried to feed Isaac when I was out but Isaac decided that was when he was going to fit in his screaming session for the day so I fed him after we had eaten. We then had to rush out to Jamie's meeting with most of his therapists. We were amazed that Isaac just sat on the floor and played with his 'Isaac the newt' toy for most of the meeting - why do children eat the fabric part of toys and ignore the plastic teether bits?

Jamie declared tonight 'Jamie tired'. He has just woken up moaning - it is like a pet ghost that goes off between 10.30 and midnight, mournful moaning until he gets a cuddle and tucked back up in bed. Tomorrow he will not like getting up before 9am but we need to have him (and the dining room) ready before 9.30am as he is having an Epicure assessment.

Photo

2009-01-24T22:19:00.003Z

Jamie was very keen for me to take a photo of him today, so here it is:

Here's Isaac playing with Jamie yesterday; they seem to be getting on quite well:

Isaac and Jamie have been quite playful today; I took Jamie to the Dad and toddler group at our local primary school, and Isaac got some mummy time to himself which always helps. At the toddler group, we made some 'digger art' (take a toy digger, roll it in paint, draw with it), and played with some of their toys. The staff had made some green playdough, which Jamie decided was a bit too much like snot so he wasn't keen to play with it! I took his physio chair, which makes it a lot easier in the session as I don't have to hold him all the time, but it's a bit of a struggle getting it in and out of the car as it has a very heavy base.

Fire station

2009-01-23T22:37:00.002Z

When we took Jamie to nursery on Wednesday we were asked if he would like to go on Monday next week as his class are going to the local fire station - they will see the fire engine too if there are no emergencies that coincide with their visit. Jamie had spent the morning watching Fireman Sam so we said yes. Hopefully he will be able to tell us about the visit - we normally have to guess then he says if we get it right. Antony had to carry the walker to school while I pushed the boys in the double buggy, then he had to collect Jamie by car as he could not push the buggy and carry the walker on his own. I took Isaac to a new baby group as we never get to do anything for him - even the bounce and rhyme at the local library clashes with one of Jamie's sessions. There were only two other babies at the group but Isaac loved it. New toys to play with and people to watch. He is able to sit for ages and use both his hands to play with toys - people seem surprised he is only five months old. I really want him to mix with normal children as he is looking at Jamie moving about and we do not want him copying Jamie physically.

When we chose the name Isaac we thought we might get people spell it with the odd 'z' or 'k' by mistake but we were completely unprepared for 'Issac' that about a third of people seem to think is right - Jamie has been able to spell Isaac correctly since his brother was born. No matter how many times we point out that Antony does not have an 'h' some people always spell that wrong too.

Bed time

2009-01-22T20:32:00.001Z

Jamie woke up half an hour after going to bed and I popped in to see what was up.

a: "whats up Jamie ?"
j: "Downstairs"
a: "and what do you want to do downstairs?"
j: "sit in the chair"
a: "and what do you want to do in the chair?"
j: "bounce!"

I just had to bring him down for that :-)

Sitting

2009-01-20T17:09:00.002Z

Jamie should be able to continue having two sessions a week at Smiley Steps as a volunteer has been found (a parent of one of the other children). That is good news in the short term but we are hoping that it is possible for them to recruit a new conductor when the situation with the overdraft has been resolved.

Today at his session Jamie sat for very short periods of time by himself, that is very good progress. He was wearing his lycra suit and arm gaiters and was holding on but he could not manage otherwise. He tries so hard - we all take sitting for granted. Isaac sits for ages and I can just put him down and most times he will stay - he even has enough balance (at 5 months old) to play with toys with both hands and transfer toys between his hands, something that is a long way off for J even if he is in his special chair. A 'normal' child is many, many, many times easier physically, we are only just realising just how easy life is for other parents. (Apart from keeping things out of reach, we are only starting to have to do that!)

Yesterday I asked Jamie who loved him and he said 'Mummy'. I said everyone loved Jamie, who loves Isaac? Jamie said 'Jamie'. Bless him. Jamie likes the Charlie and Lola television series and on Sunday Lorraine bought Jamie a giggling 'Lola' and I got a giggling 'Charlie' - he keeps saying 'cuddle with 'Lola'. Lola is Charlie's little sister, small and very funny. We say Isaac is Jamie's little brother, small and very funny - well, he is when he blows raspberries.

Do disabled children come last this year?

2009-01-16T20:49:00.007Z

This happened on Saturday:
www.thisiskent.co.uk

Basically the Child Development Centre that Jamie attends was evicted from the building on Saturday as the hospital wanted another ward quickly. The children have had services cut while the staff have been putting equipment into storage. The charity which helped the centre raised a lot of money for a sensory garden which cannot now be used by the children and there were sensory rooms as well as physiotherapists, occupational therapists, speech and language therapists all under one roof.

Jamie's other therapy, conductive education, is likely to be reduced as there is an overdraft that needs to be reduced. As a member of staff is pregnant they are taking the opportunity not to pay anyone while she is off on maternity leave - we were not asked to fundraise to cover the new member of staff. We assumed that there was minimal cost as the only extras would have been:
1) overlap to introduce the new conductor to the setting
2) the difference in the amount claimed back from the government - either 92% OR 104.5% may be claimed back by the employer
3) the equivalent of a years annual leave for the member of staff that is going on maternity leave, assuming she took a full years maternity leave.
Conductors receive 3-4 years training but the trustees want volunteers to step in.

One in every four hundred children are born with cerebral palsy each year and there are only two real therapies that help: conductive education and lifelong physiotherapy. Both are being reduced - Smiley Steps is the only centre in Kent providing conductive education to pre school children.

At least J likes his nursery! His chair is being set up on Wednesday so he will have good seating and lots of input in the class.

In other news, I spotted this newspaper article which puts an interesting spin on closing the children's centre - it's great because they can treat more patients. Hmmm.

I put this comment on, for what it's worth - they've not published it yet:

The staff at the childrens centre were given literally hours notice of the move and had to come in at the weekend to rescue all of the childrens equipment. 'A' block is being used to store the equipment; it'll be weeks before they can reschedule appointnments. The childrens centre also had a sensory garden which was funded by £100,000 of charitable donations which the children can no longer access. We're furious ! This affects hundreds of children and was done with no consultation.

Nursery

2009-01-14T18:08:00.004Z

Jamie started nursery this afternoon and he wanted to sit with his helper rather than me at the beginning so that was good. I stayed about half an hour as planned but unfortunately his physiotherapist had a meeting and did not manage to turn up. It was difficult for the staff as Jamie's chair is not going to be set up until next week. When we get our new car we can take Jamie's walker or standing frame for some sessions - it may even turn up next week. We were asked to collect Jamie half an hour early as he was tired - luckily tired but happy and with a picture in his bag from one of the little girls at nursery.

Here's Jamie in his new school jumper:

Bigger blue car

2009-01-10T20:23:00.003Z

We took Jamie to see cars today and we have ordered one but have no idea how long it will take. Mobility have to sort out some details and we have to make a payment and the garage have to fit parking sensors for us (well, for me). Antony sat Jamie in the drivers seat in the showroom, Jamie told Antony to get in the other side then when he was holding the steering wheel Jamie said 'daddy turn the car on'. We told him he would have to wait until he was 17 - but it is unlikely he would be able to drive then. Many thanks to Vicky for babysitting.

We may be able to visit people soon ... and we should be able to fit all of us plus stuff in the car at once! Just need to get the confidence to drive it now - and get used to the gear stick in a different place and odd handbrake button.

Growing up

2009-01-09T21:09:00.002Z

I took Jamie and Isaac to the local school today to buy Jamie a jumper as he will start nursery on Wednesday. Most children started back this week but Jamie will only be going on Wednesdays this month and the physiotherapists could not make it this week to set up his chair so next week it is. You do not have to have a school jumper in the nursery but it is one way to help Jamie feel as if he belongs there - he will be unusual enough as it is. One of us will spend the first half hour with him and Jamie is going to have one to one support.

My letter (our letter really) to the chairman and trustees of CPC seems to have had an effect ... I will find out more soon but I know they were angry. Did they really not expect graduates to be able to put an argument together? Were they surprised we had paid £1 for the accounts on companies house? (Well, I tell a lie there, we spent £4 as we did not know which reports we wanted.) Did they think we would just say 'oh, okay thanks for the therapy we have had so far, we will go away now'. No we will not. Jamie and 31 other children could benefit from therapy but places are being cut for a reason that has not been explained. The reason given is not a valid one so we want the real reason. It is not some hobby, conductive education is the only thing other than lifelong physiotherapy that can help these children learn to control their bodies more effectively. Isaac at five months can do many things physically that Jamie cannot - but Isaac does not have to try. Sitting, using two hands, etc seem like basic things to us but long term goals for Jamie. J has managed to sit for a couple of seconds recently when wearing his lycra suit and arm gaiters - I explained how Isaac was using straight arms for balance at times and Jamie is starting to copy him.

Isaac has started screeching when happy, I tried making the same noise back to show how annoying it was and he was very happy about that too. Jamie got up at 10.20am today and went to bed at 7.45pm, earlier than normal - he gets tired wearing his lycra suit. Isaac got up at 7.45am and went to bed at 9pm, later than normal.

Three today

2009-01-05T22:08:00.001Z

Jamie has had a lot of cards for his birthday, a couple saying 4 today! He can read numbers and was a bit confused. Thank you to everyone who came to his party, he said he enjoyed it.

Never in the field of human conflict...

2009-01-01T18:32:00.000Z

Just for Colin:

pix

2008-12-30T21:30:00.004Z

Isaac standing, with a little help:

Jamie with a certain popular train:

Christmas day by the tree (put up on Christmas eve at midnight!):

Phonics

2008-12-28T19:44:00.001Z

This evening, after Isaac went to bed, we taught Jamie phonemes.

Gulp.

Happy new year?

2008-12-27T21:34:00.002Z

We hope anyone reading this had a happy xmas. We finished opening presents for the boys today - Isaac was being overwhelmed with lots of things in one go and Jamie wanted to stop and look at the thing he had just opened. Unfortunately the toy that Jamie loves the most is a train called Thomas as after he had finished playing with it he was saying 'come back Thomas' ... we were avoiding those toys for obvious reasons as although J loves trains we are not comfortable with some of the merchandise. We had to search for a non-themed ready bed for Jamie as we could not have him sleeping in a 'Thomas' bed and we have hidden the doorsign someone bought for him as we could not have a 'Thomas' sign on the door our Tom was supposed to share with J.

We hope everyone has a happy new year and we will see some friends on the 3rd for Jamie's birthday party.

Unhappy steps

2008-12-18T22:18:00.002Z

Smiley Steps where Jamie goes for therapy twice a week is being threatened by stupid trustees. I won't go into detail as I am upset and obviously don't know everything but the gist of the matter is that one of the staff is pregnant and the trustees have refused to pay for a replacement even though she will only get statutory maternity pay (and that can be claimed back from the government). The only extra cost would be during the time (a couple of months) that the member of staff who is pregnant would be training the new person. The trustees do not really know what goes on in the therapy obviously as some sessions (including one of Jamie's) are to be cut and they DID fork out for a new website. What is more important, the possibility of some preschool children leaning to be able to sit up, roll, crawl and maybe even walk with a frame / gaiters that most of us just take for granted or some fancy website that one or more of the parents could have done, possibly for free?

Many thanks to Martin for taking the day off work and babysitting Isaac so I could take Jamie for therapy today. Jamie has managed to sit for a couple of seconds wearing his lycra suit and arms gaiters this week, that is brilliant. I explained to him that Isaac balances using his arms as he cannot sit without using them yet and that Isaac kept his arms straight. As Jamie is unable to do this I asked him if we should try his gaiters to hold his arms straight and he said yes - when he realised he was sitting he got so excited he fell over. Hopefully it will be mind over body in time. I am always amazed when Isaac does something easily but Jamie gets upset when I get excited over the baby being able to hold things in two hands or shove an upside down spoon in his mouth. Jamie will hopefully be able to learn from Isaac physically.

Me to Lorraine: 'Jamie counted to 69 for Vicky but he could not remember what comes next.'
Jamie (from other end of room): 'Seventy'

Jamie broke the cute-ometer

2008-12-14T20:39:00.002Z

We're watching the sports personality of the year on BBC. They had a bit on the paralympians, who were all saying things like 'I am not what you think I am' and 'I am a paralympian' and they all ended with saying 'I am me'.

Jamie proudly told us 'I am me' - well, we cried ;-)

Jamie's song

2008-12-14T19:32:00.002Z

Jamie has started to sing along to tunes; usually there's no variation in pitch and the whole tune consists off 'Dee Dee Dee Dee Dee' :-)

He's recently branched out into lyrics - here's his latest number :

"Old macdonald had a farm
ee-eye-ee-eye-o
and on that farm he had a farmer
ee-eye-ee-eye-o"

Invite

2008-12-13T16:49:00.002Z

We are hoping that we will have the conservatory clear in time for xmas (it was supposed to be done already but then we wanted to do the kitchen before Isaac was born and he is already being weaned). We are planning to invite a couple of children round for Jamie's birthday party on Saturday 3rd January and adults who know us would be welcome in the evening. Pop a comment on or email us if you would like to come. For the children we were thinking of having a teddy bear / favourite toy tea party - Jamie will probably choose 'Mr Frosty' teddy or Bob the builder. Isaac will not care as long as he can play with a spoon! We should be able to use Jamie's ball pool again ....

30 hour days needed?

2008-12-08T19:55:00.003Z

You need more time if you have a disability. As well as the extra (sometimes lots) paperwork, plus therapy sessions, etc you need longer in shops as you have to wait for the wider aisles. I got a bit fed up today as one of the two wide aisles was closed, all the other checkouts were free but I was stuck waiting for a pensioner (who did not need the wide aisle) to slowly go through the checkout. I know a double buggy is a reasonably normal thing but with a nearly 3 year old you would expect them to be walking and to be using a single buggy. If Isaac had not been sleeping we might have got through quicker as he is quite loud. Jamie is very patient - he does have to wait for everything as he cannot do things for himself although he knows exactly what he wants.

When I was packing the checkout lady said that she had a customer asking her if the minced beef contained pork ...

Two kings

2008-12-07T22:33:00.004Z

A few days ago when I took the boys to the post office there was a queue. As the double buggy will go through the doorway but only just I waited until there was enough room inside so we did not block people who were coming out. When we tried to leave I had to say (several times to one person) excuse me, please can I get out, I need more room. Surely it is obvious when I am almost at the door the size of the doorway compared to the buggy and that no, I cannot get past if they flatten themselves against the side. I did not want to have to employ the 'needing to get out of the Parisian underground train' method - barge into stupid people who insist on standing in the way and blocking the exit.

Jamie and Isaac went to a party yesterday and they both coped really well with all the children. Jamie enjoyed himself and we were pleased but surprised. It had a princess / prince theme so Jamie spent the morning making a crown so he could be King Jamie. It would seem that Jamie's favourite colour is yellow as he chooses it almost all the time. Isaac had a red crown to go with his bow tie.

London train part 2

2008-12-05T22:23:00.003Z

Forgot to mention the conversation we overheard while waiting for our local branch line train:

kid1# you know you can get special k round the back of tesco
kid2# special k ? What's that ??
kid1# ketamine - it's like you know horse tranquiliser
kid2# um, /why/ would you take horse tranquiliser ?
kid1# it relaxes you.
kid2# er, yeah...

As an aside, this is the second time I've posted about ketamine - they gave it to Jamie during his heart op. Boy, was he relaxed - for about a day and a half afterwards...

Lack of sleep

2008-12-03T20:31:00.003Z

We are going to bed later than usual to try to get things done and less sleep has made me very forgetful. I have posted a few Christmas cards already and there is at least one I did not write in! Glad the recipient knew my writing - that is what happens when trying to do lots of jobs and play with two boys at the same time. Isaac is sleeping longer now and waking less as well, proper nappies have helped. We left him in disposables for ages as it is easier to tell at a glance if they are wet but like his brother a real nappy with booster liner works best. We do wonder if they are as good during the day though, they make a small child's legs be further apart so sitting, rolling etc. are harder. However it is winter and they are a bit cheaper and much warmer.

We had a visit from staff from Jamie's nursery today. There is a lady called Debbie who will assist Jamie and his chair has already turned up. We are going to the nursery on Wednesday next week to discuss his start date etc. It looks like Jamie will be going three afternoons a week, Monday, Wednesday and Friday to fit in with his other therapy. There will be 26 children including Jamie so hopefully he will feel comfortable and not be too shy, he liked Debbie today so that will help.

Isaac is wearing some of Jamie's old clothes including the sleepsuit below - he is already as long as 3-6 month clothes and not yet four months, I already have his 6-9 month clothes ready. Jamie is now into his 18-24 month clothes at nearly three years old. Daddy told Jamie that Isaac had 'chubby chubby chunky' thighs and when I said 'thighs' today Jamie immediately said 'chubby chubby chunky'!

Grammar + train

2008-11-30T21:13:00.002Z

Jamie's picking up all sorts of grammar - it amazes me how children manage that. Today, he was playing with three spoons - a metal spoon, a plastic spoon and a wooden spoon.

M: What's this one made out of ?
J: Metal
M: What's this one made out of ?
J: Plastic
M: And what about this one ?
J: Wood.

So he's figured out that a wooden spoon is made from wood. Who taught him that? - it wasn't us :-)

We also went on the miniature railway again - they were having a Christmas special this weekend. Jamie as usual loved it, though I think he was a little bemused by the beardy bloke in the shed handing out sweeties :-) As well as the ride on the train (in an enclosed carriage thankfully - it was raining and with the windchill it was about 2 degrees), they let Jamie sit in the cab of one of the engines and let him press the green button for the horn.

Doughnuts?

2008-11-28T20:04:00.003Z

I think I need to buy some doughnuts for Jamie. We noticed he was getting thinner as we have cloth nappies and we have been doing the poppers up differently. (Isaac has 'chubby chubby' legs, wider than Jamie's.) He did refuse to eat most of the time when he was ill recently but we did not realise how much weight he had lost. His grandparents took him to a therapy group today and he has lost 1.2 kilos since he was weighed 2 months ago, he is about the weight he was in February, not good. Jamie is only 10.4 kilos now so I think it is time to get out extra chocolate buttons and buy doughnuts. Underweight children should not be losing about ten percent of their bodyweight.

We tried a recipe today that Jamie liked and involved roasted butternut squash (aka steak), apple and cheese so maybe we will have to make it again with a little more cheese. All good though, vegetable, fruit and calories. Jamie also tried peanut butter this week and liked it so maybe I will have to make flapjacks (and hide them from the biscuit eating shed dweller aka Daddy).