Sad day

Today was a sad day in the Johnson household. Several weeks ago we got four kittens - we only meant to get two but they were all so sweet, and one was the runt of the litter so Craig couldn’t leave any of them behind (yes, he’s an old softy!!!) One of the female kittens, Snowy, was killed this morning in somewhat tragic circumstances.

The children are really upset and have had two funerals today - Ellie and Sophie got their hopes up that she was going to come back to life as cats have 9 lives don’t they?? I hated having to tell them that sadly she wasn’t going to resurrect.

In other news, there seems to be a bug in the house. Robbie hasn’t been well for several days with sickness. He looked like he’d recovered yesterday but has relapsed again today. Jack has slept most of the day and has a temp over 100. And poor little Alfie has had an upset tummy for a few days.

Millie was back at the Drs today with her ears. They seemed to have cleared up over the weekend but have started oozing and smelling again. The Dr took a swab to find out what is causing the infection and given her more anti-biotics and a spray. Hopefully this will clear it up but he’s asked us to go back in 2 weeks to get it looked at again.

It’s the first full week of the summer holidays and the children are poorly - typical!! I’m really lucky that they are very rarely ill but when they are it’s often more than something minor.

We haven’t done much yet - we usually have lots of plans for the holidays and never get round to doing any of them. I’m thinking of taking some of the children camping for a night, just somewhere local so if it goes hideously wrong we can come home. We might even put the tent up in the garden to play in - I loved having a tent up in the garden when I was a kid.

Poor Millie's ear hasn't got better, if anything it's worse. The gunk is thick and smelly now. Yuck!! I rang the GP to see if I could get an appointment but they said they've got nothing. I'm not too worried as I'd rather take her to the out of hours service at the hospital because I'd have to take all of the children to the GP surgery so that's where we'll be going tonight when Craig gets home from work.

It's been an interesting week with Craig in the office. The children have all finished school for the summer now - hurray! I got the craft box out on Wednesday and there is a covering of glitter all over the house. The floors sparkle, we all sparkle, the cats sparkle (stupid things keep rolling in it!!) and even our food sparkles - I grated some cheese for dinner last night and it had glitter in it. I'll be trying to get rid of it for months, except I probably won't because secretly I quite like it!!

Yesterday I noticed one of the car tyres was flat and was worried about driving it (I had visions of it exploding while I drove - melodramatic? Moi??) Our next door neighbour is also our window cleaner and by a stroke of luck he came to do the windows. I asked him what he thought to the tyre and if it would be safe to go and pick DS1 up and he very kindly sorted it out for me. What a lovely bloke he is!! I know he won't be reading this but thank you soooo much, I am really grateful to you.

Today we've had a day of not doing very much at all - we've just enjoyed plates of fresh pineapple and melon. Yummy!

I love the school holidays - the chance to just chill out together is great!

Poor Millie has got an ear infection. She had her second lot of grommets in just before Christmas but apart from the glue ear she's never had any other problems with her ears. There's fluid coming out of it and its a bit of a mess so she's got anti-biotics. I'm not keen on them having them unless they are necessary, but I do believe they are at the moment. It's painful as well - you can see how red it is. I'm very tempted to keep her off school tomorrow but it's the last day. I will see how she is in the morning I think - tired I would think as it's gone midnight and I can still hear her and Sophie upstairs playing...

The learning mentor at school sent a book home today that she and Millie have made with all the information she needs for her new class. We need to look through it over the holidays. Hopefully it will help her.

Sorry this entry is quite boring but I want to try and keep it up to date and not do my usual thing of writing an entry and then doing nothing for months. So that's it. Short and sweet. Off to bed now as Craig is in London this week so I'm doing the school run for a change. Roll on Thursday!!!!

Right up to date

I realised last night I forgot to mention the cause of Millie being so ill - it was a blood disorder called ABO incompatibility. In Millie’s case it’s an AO incompatibility. I’m O+ and she is A+ and for some reason my blood cells were killing hers off. It doesn’t affect the baby in the womb, it only kicks in once the baby is born. In the long term if Millie ever needed a blood transfusion it would have to be very careful cross matched to avoid it happening again.

When my next baby was born she had the same thing but because she was checked for it at birth it was treated at an early stage. Neither of the following two were affected.

So anyway, I’ve been convinced there is a problem, and the word autism often reared its head in my mind. We were convinced she was autistic as she showed some of the signs of it - often she would do things that were just so autistic but then she was often perfectly “normal”.

I’d resigned myself to never knowing the truth, to always having the nagging doubt in my head that her brain had been affected in some way but never having an answer. A while ago we had a meeting at school about Millie as she had been on something called the “school action” programme. I have to admit ‘m not entirely sure what it is, but basically it’s for children who need extra help. They did acknowledge that she had a problem settling into her new class every September and that they would try and help her settle this year. Every year I has taken her until Christmas, and she’s been very hard work until then (mind you, she’s hard work at the best of times). Last year her teacher was fantastic, knew how to handle her, had good strategies to help her cope with going from one lesson to another and she was pretty good.

Every year the school has moving on day where the children spend the morning with their new teacher in their new classroom. Sadly, no one had briefed her new teacher on the ways of Millie and she lost it. Big time. I’m not entirely sure what had happened but the poor man ended up having to get the SEN team in to try and calm her down but she was so far gone even they couldn’t settle her - they are fantastic with her so it must have been really bad. In the end they called us to go and collect her. I must add here that her new teacher is very experienced and it really wasn’t his fault.

Of course she was fine when we picked her up and took her home. She hates school and desperately wants to be home educated. I think home is the best place for her and hate myself for not having the confidence to do it. We did take her out of school a few years ago and it was the best thing we did. She was so much happier, she was laughing and smiling so much more, but we didn’t really do much learning. I know it was what she needed but I did feel a failure and it didn’t help I was about to have a baby. I think we will probably end up home educating her again sometime soon its just taking that step that is so scary at the moment.

For us that was the final proof we needed that there is a problem. It is such an autistic thing not being able to cope with change and we decided we would go into school and speak to them.
The following afternoon we got a phone call asking us if we’d go in to talk to them about transitioning Millie into her new classroom. We were pleased as it meant we didn’t have to make the appointment and that they were taking things seriously. I was going to ask if the SENCO could come in to speak to us as well and was very pleased when we arrived and were asked if it would be ok if she attended.

They told us what had happened on Wednesday and that they’d had more problems with her on Thursday as well. It had obviously affected her badly. We were asked what our opinion of the situation was and I told them how I was convinced she had either autism or aspergers and this was just more proof to us. That was exactly what they were going to tell us - they were worried we were going to be those parents who deny there is any problem with their child so were very pleased that we felt the same. I feel that one of the problems is they manage her so well they don’t often see the odd behaviour and it took that one day to remind them that there is a problem.

We were advised to take her to the GP and ask them to refer her to a paediatrician for a diagnosis and the learning mentor (who has been fantastic) wrote a letter to take with us.
We’ve now had that appointment and the GP agreed that she seems to be autistic and referred her. However, you don’t get an appointment with a paediatrician, you get seen by an adult psychiatrist who spends time at the house observing the family. This sounds a bit scary. I know they’re not coming to make judgements about the family but you still wonder what they will think. We’re now waiting for them to get in touch but it could be a few months.

After spending years desperately wanting someone to listen to me, for someone to believe me it’s suddenly sunk in. My little girl is probably autistic. I looked at her one day and just wanted to cry for her. I’m just glad that it only seems to be mild and I don’t think it will affect the rest of her life too much.

We’ve done some reading on aspergers - we think it’s more likely that she’s got aspergers because academically she is doing so well - and some of it has made me sad. One book, “Martian in the Playground” by Claire Sainsbury, describes how the author felt as a child and that made me want to cry when I thought about Millie feeling like that. It was a really interesting read though, and worryingly some of the traits applied to me!!! A lot of it also applies to Bethany, the eldest. It’s too late to get her diagnosed I think as she starts her final year at school in September so she wouldn’t get any extra help now. But I plan to go into her school after the holidays to talk to them and see what they can do for her to help her through the last year and her exams.

So that’s where we are at the moment. Its just waiting now. In two days the children finish school for summer and we have 6 weeks of nothing much planned to look forward to. I’m really looking forward to it, not having to get up early in the mornings, no packed lunches to make, no school run to do, no homework. And we can go out for the day without needing to be back for pick up time. It’s going to be lovely. I hope the weather stays nice for us but even if it doesn’t we can do crafts and things indoors.

I’ve got lots of plans for things I’d like us to do and make but whether we’ll actually get round to it remains to be seen of course. Every year I have lots of plans and never quite carry them out as the children are having too much fun playing.

A bit of background - second attempt!

Right, second attempt. This time in a word doc so there’s (hopefully!!) no chance of it going awol before I can post.

So Millie. The title comes from a phrase you will hear regularly in our house when our 8 year old does one of her mad things and we say “oh, that is so Millie!” You’ve probably guessed the blog is mainly going to be about Millie, but I’m sure I will use it to talk about other things as well.
A bit of background first - I suspect this will be a shorter version of what I wrote last night simply because I can’t be bothered to write it al out in detail again. Despite losing it I found it quite cathartic to write because I have found it impossible to write in detail before. I have some photos of Millie from when she was born that I want to scrapbook but I can’t bring myself to do it yet.

I had a very easy pregnancy with Millie with no problems at all. The only downer on the whole thing was when I went for the 12 week scan and they did a nuchal fold test without telling us anything about it. We were given a 1 in 32 chance of her having Downs Syndrome but we chose to have no further tests as we didn’t mind if our child had any problems and didn’t want to take any unnecessary risks with our baby.

She was born after a very quick and easy hour labour in the early hours of 24th April 2000 and we decided to call her Millennium April, or Millie for short. The midwife came to visit that afternoon and commented on the fact Millie was quite yellow. I wasn’t too worried as my previous three babies had been jaundiced and it hadn’t been too serious with them. The MW said she would do a blood test to check her SBR (serum bilirubin) levels the following day but if I felt it needed doing sooner then I should call the maternity unit in the morning.

The following morning my instincts were telling me to call the unit but my rational side was telling me they would want reasons and I couldn’t give them any. She didn’t seem more yellow and she was waking for feeds. Eventually I gave in to the nagging in my head and rang the unit. The MW I spoke to said it was too late to have it done as the courier was collecting the samples in an hour to take to the lab at RUH in Bath. I accepted this, I had made the call, and I wasn’t that worried still.

About half an hour later we got a call back from the unit asking us to take Millie over there and they would have the sample couriered over especially. Off we traipsed and she had her bloods done and we went home to await the results. About 5pm we got another call asking us to take her back to have the test redone. They thought he sample had been contaminated on the way over as the levels were so high. I was advised to go home and pack a bag while we waited for the results of the new test. I was surprised and asked could we not wait until the morning to take her in. I didn’t notice the hint of panic in the MWs voice as she told me that no it couldn’t wait until tomorrow until afterwards.

At 9pm we got a call from RUH telling us to get Millie over there as quickly as possible and to take her straight to NICU (neonatal intensive care unit). So off we went on the 45 minute drive to the hospital. As soon as we got there we were ushered into a large room at the back of the unit. We later discovered this was where the most seriously ill babies went, then as they improved they moved through a series of small rooms towards the door. I was trying to take Millie’s clothes of while answering a series of questions and obviously taking too long so a nurse offered to help me. I looked away from Millie for about 5 seconds and when I looked back she had been stripped to her nappy and was in an incubator having drips and things inserted.

I was beginning to realise that things might actually be quite serious now but it wasn’t until a Dr came to see me a little later on and explained what was happening. Millie’s SBR levels were very high. At 150 they start treating with phototherapy, at 350 they do a blood exchange. Millie’s had gone up to almost 600.…. I was advised to prepare myself for the worst because it was unlikely she would survive such high levels. IF she survived then she would almost certainly be severely brain damaged. The absolute best outcome which was very unlikely was that she would be profoundly deaf. They had blood on its way from the blood bank and had several nurses and two paediatricians ready to do the exchange. Her levels continued to rise to 700. I was told to try and get some sleep on the post-natal ward and they would phone when they had finished.

Amazingly I did manage to get some sleep and when I woke up the next morning there was been no phone call. I tried not to panic telling myself that if it had all gone horribly wrong they would have called to tell me. I went down to see her and she was sleeping. She looked so huge in that incubator especially compared to the teeny tiny babies around her. How could she be so ill?
Over the next week she stayed in the big room as her SBR levels were monitored and she received triple phototherapy. I was allowed to feed her but only for 10 minutes at a time. No chance just to cuddle her, as soon as she had finished her feed a hovering nurse would grab her and put her back in her little plastic box.

Amazingly she had survived, but we still didn’t know what damage the jaundice had caused. As she improved she was moved through the series of rooms until we could finally take her home.
At about 6 weeks she had a hearing test which showed no damage to her hearing, and she showed no signs of that severe brain damage but of course it was still early days and it could show later on.

When Millie was about 6 months she started to display some of the odd behaviour that was to convince me that we hadn’t got away scott free. She suddenly stopped allowing us to cuddle her. I could hold her to feed her but that was it. As soon as the feed was over she wanted to be put down. If she was crying we couldn’t pick her up to comfort her. Over the next few years she continued to refuse to let us hold her. We couldn’t hold her hand. If she hurt herself we had to leave her to cry as she wouldn’t allow us to cuddle her. No one else could touch her either which was quite difficult. If she fell over at toddler group other mums would go to pick her up and I’d often have to shout across the room to the mum telling her not to touch her - it must have made me sound crazy but the resulting tantrum because someone had touched her wasn’t worth it.

After we moved to Lincolnshire she started at a local playschool. I explained to them that they mustn’t try to touch her when she started but they hadn’t believed me at first. After a week or so one of the staff told me that they could now see what I meant about not touching her. They’d thought I was over exaggerating until one day when she was crying they had tried to cuddle her and she had gone into meltdown.

There were other strange behaviours - almost every single night for about 18 months she would smear the contents of her nappy around her bedroom. Nice! And I had a glass display cabinet that she would rearrange to how she wanted it. If I put it back the way I wanted it by the time I walked past it again she would have moved everything again. If I left it she wouldn’t touch it, until I tried putting things back and they would be moved to her liking again.

When she started school she had her little rituals she would have to carry out before she could sit down for the register and she would do odd things like sitting for hours pouring glue from one container to another. There were lots of other things we noticed over the years but every time I asked the school if they thought there may be a problem they always said no they didn’t think so. If I spoke to a Dr they would always ask if school felt there was a problem and when I said no they said she was probably fine.

So for years we were convinced that there was something “wrong” and no one seemed to listen to our concerns. Until about 2 weeks ago…..

A bit of background

Arrrggghhhhh, I spent an hour writing this and lost it before I could post. Will try again tomorrow, too depressed about it to do it tonight.