Thursday, 28 July 2011

Leila's 4th Birthday

I decided to have Leila's birthday party a few days early at the weekend as they had just broken up from school and thought it would be a good chance of her little nursery friends turning up. Well, out of the 20 in total invited we ended up with 8 guests. Leila didn't mind she had a fantastic day, and the party went really well. I went with a princess and pirates theme, sadly we only had one pirate arrive. We made tiara's and telescopes in the garden, then while the kids were helping themselves to the buffet Graham and another dad hid loads of gold coins in the garden. I gave all the kids gold bags and told them to go and find the treasure. It was a big hit, they loved it. Then they brought their treasure to me and I rewarded them with sweets. We also played pass the parcel and musical statues and Graham entertained them all on his guitar while they made up songs.

For her birthday I bought a joint present for the garden for her and Lucy (who's birthday it is in 4 weeks time) Last year they had a playhouse, this year a swing and glider. I also bought her some smaller presents to open up.
So my little princess is now four!

Monday, 25 July 2011

Lucy's Diagnosis

I'm a bit late with this but last Tuesday I took Lucy to the pyschologist for another assessment, she has them every six months. We went on the bus and it was quite a long walk but she didn't complain. In the waiting room she was really good, she sat reading books to me then played with some building blocks. She was quiet and never complained about the wait, which ended up as 45 minutes. Some of the other children in the waiting room were complete nightmares, I was worn out just watching them.
Then we went in to see the dr. Lucy was ok for a few minutes then I lost her as she went off into her own world. She was upside down on the chair and making weird noises. While I was talking to the dr Lucy was completely oblivious of what was happening, when we directed a question at her we had to try several times before we got a response. This is quite typical of Lucy, one minute she can be perfectly normal and fine, then she's off into her own little space which is hard to penetrate, we usually say she's off in Lucy's world.
Her report from school stated that although her work was good she often became distracted by seemingly nothing and just stopped working. She would talk at totally inappropriate times during lessons and still didn't mix much with the other children. She has her special friends but she doesn't really interact with them either, I see an example of this when she comes out of school, she'll beg me to wait for a particular friend, then walk with them for about 10 seconds before going off on her own. She doesn't like change at school and will become withdrawn if told to do something different. she also complains that the other children are too noisy.
At home she is very obsessed with her gaming, she is happiest when playing on the wii, and when we tell her to come off (with give her time limits for play) she will often want to go on the pc and look at websites or videos relating to her games. We try to encourage her to do something different but she'll go back to it as soon as we take our attention away.  She is also very routine orientated. Her game goes on at the same time every day, although it's different at weekends or when there is no school (although if she if off school sick then the game is not allowed on.) Then after dinner she likes to go out in the garden for 1/2 hour. She hates going out with us and refuses to go to the shops. She will reluctantly go out if we are going somewhere nice, she's be quite happy to never go out at all. The only other place she will willingly go is her nan's house, which is next door but one. Another problem is her tioleting, she has never gone to the tiolet for a poo, she has to start it in her pants first. We have tried everything. Tiolet training at first was a real struggle and she wasn't dry until nearly 4 yrs old.

With all this evidence in mind the pyschologist came up with a working diagnosis of high functioning autism. So although she is sure that Lucy has a form of autism she will need continous assessment until we have a definate diagnosis.

Tuesday, 12 July 2011


Leila has now been diagnosed with pneumonia. Last week I took her to the drs 3 times, on Monday I was told her chest was clear and she probably had a virus. On Thursday when I complained she was tired all the time because of the coughing keeping her awake I was given a bottle of cough linctus. Saturday, the dr said her chest was clear but thought she needed an xray and gave me a letter for the hospital.
So yesterday I took her to the hospital radiography department and she had her xray. When sent like this the xray is usually sent to your GP and you have to go and see them in about 5 days for the result. This time the radiographer told us to take her to the GP straight away and sent her xrays immediately. So we knew something was up. The dr said she had bi-lateral inflammation of the bronchi (bronchitis) and masses on both lungs which indicated pneumonia. So my little girl is really poorly. We've been given some strong anti-biotics and have to go back for a follow up xray.
Leila has been coughing since just after Christmas. I've taken her to the dr so many times. She had anti-biotics which did nothing to help. Then the dr thought it must be asthma and gave her a reliever inhaler (Ventolin). It helped a little at first but then she got bad again, so two weeks later she was given a second preventive inhaler. This didn't seem to have much affect at all.
I'm not a dr so I don't know what has happened for her to get so bad, but I do think she has asthma (Craige had asthma as a child too) and she's been getting infections one after the other on top of it.
I've been carrying on as normal thinking it's just asthma and we need to carry on as it will be with us for years. I've been sending her to nursery, which has been ok mostly but last week she was just getting more and more poorly. Now, I'm going to keep her home and try to get her better.

Friday, 8 July 2011

School Day Trips

This week it was the girls school day trips and they were both going to the seaside, Weston-Super-Mare. Only Lucy went on Wednesday and Leila went to today. To keep down costs we decided one parent to go with each. Lucy chose daddy so I was with Leila.
I'll start with our trip today. First off I found out that the two friends I speak to most at the school were not going so I wouldn't have anyone to hang out with. Never mind I though, me and Leila can have some special time together, and I was sure we wouldn't be on our own all day. Little did I know that I would be the only person who did not take someone else along. So ok it was just me and Leila then, we could still have fun couldn't we?

We arrived at lunch time during a torrential downpour, so we ran into a shelter and had our picnic. Then we hopped from shelter to shelter to get to the pier, but still ended up like drowned rats, literaly dripping wet. The pier was ok, Leila went on a few of the little rides and it was warm and dry. But Leila really wasn't her usual bubbly self and kept asking me to pick her up. I was dying for  a coffee but the queue was long and Leila was bored, so I thought we'd go and see if it had stopped raining.Yeah! it had

So off to the beach for a donkey ride....Leila looks over the side of the pier and says 'wow, what a big muddy pond!'

We get to the beach and Leila starts screaming for me to pick her up. The sand is wet and sticky like mud and we've got sandles on. Leila hated it. I carried her to the donkeys and we got into a train being pulled by a horse. The ride along the beach was lovely, the sun shined and we both enjoyed it.....that was the best 5 minutes of the day.

After I carried her back to the pavement, all the time she was screaming 'carry me', but I was carrying her, but she still carried on screaming. So I put her down and she screamed more, so I picked her up and she screamed still, I sat her on a chair, I sat her on my lap on a chair, I offered her food, drinks, sweets, ice cream, gifts, but I couldn't stop her crying. Eventually I went and sat with her in an empty shelter and waited for her to cry it out. Obviously she just wasn't feeling well.

Once calm was resumed I decided to continue my quest for a cup of coffee. There was a cafe nearby on the beach. I made a deal with Leila, I'd carry her to the picnic bench on the beach and she could wait there for me while I fetched a coffee. I offered her an ice cream but she refused. Once on the bench we spotted one of her little friends with a bucket and spade. She came over to Leila with her uncle and tried to entice Leila to play but it didn't work. So I sat and drank my coffee with Leila on my lap and managed a 10 minute chat with another adult. It had been sunny now for around 40 minutes so I guess the big black ominous cloud above us was a reminder that this was definately not going to be a beach day. I announced that  I didn't fancy getting wet again and left for the shelter of the local town centre. We went to a little playground that I knew of, but Leila didn't want to play. Then the heaven's opened again so we went into the indoor market. It was crap but dry. I was bored, Leila just wanted to be hugged or carried, I couldn't think of anything else to do and it was another hour before time to go home.
We ended up in a cafe where I had a pot of tea and Leila had a plate of chips which she didn't touch (the waitress asked why and I told her she wasn't feeling too good so she didn't charge me for them) she sat colouring a picture and pen set I'd just paid £1 for in the market. We stayed there until it was time to get back on the coach.
The journey home was a nightmare 4 hours (should have been 2) we had a little girl fall down the steps of the coach and smash her face in, a mum go missing for 25 minutes while we were all waiting at the service station, turns out there was big queue at KFC (it was supposed to be a 10 minute tiolet stop) we had to have a second tiolet stop for one child who was desperate and despite the desperate please of the coach driver, everyone else child had to go pee urgently too (or rather the parents were desperate for a fag) We stayed on the coach, Leila didn't want to move.  So we got home two hours late and totally miserable. I had a crap day, but I feel so bad that my little girl had such a terrible day too.

Graham's trip with Lucy hadn't been totally stress free either. He'd been placed in charge of a friends little girl who was really cheeky and naughty all day. But they did have the sunshine, and Graham had company all day when he teamed up with another mum.

Monday, 4 July 2011

The Quiet Birthday

Today would have been my little brother's birthday had he still been alive.
His death has affected me so much but I can't talk to anyone.
I didn't speak to him for 8 yrs prior to his death, apart from the last few weeks of his life while together we watched our mum deteriorate quickly into her demise.
He did some bad things, some would say unforgivable. But I can't hate him now he's gone. He wasn't all bad, just wired up wrong. It's sad that there is no real cure. So yes, even though he turned my life upside down and caused me and my family incredible amounts of distress, I can still find it in my heart to forgive him. I still feel pain that he died in such a horrid and lonely way. I still miss him.

I miss him as the child I grew up with, not the man he became.

Friday, 1 July 2011


Over the next eight weeks we have four family birthdays, so a very busy birthday time for us.
This was eldest daugher's 22nd birthday and she was moody from the start. Last year as it was her 21st I wanted to make it special, but she didn't. Her dad came over from France, she hated him being here. I had a party, not a birthday party and not actually on her birthday but as it was a few days before everyone turned up with cards and gifts. She hated it. She complained all year. This year I tried to play it down. I mentioned a cake, she said no, then she agreed if she could help decorate it. So we made a cake the night before and it was fun.
On her birthday I took her out to lunch to Yo Sushi. That was good, we love sushi.
Then she got moody, and snappy, and then horrible.
WE ended up shouting at each other by the end of the day. I really didn't want to, but she left me no choice, there is only so much I can endure.
The cake was nice though (Chocolate)