2 Cor 12v9

Thursday, 30 December 2010

Juice Juice Baby

Father Christmas thought I was too little to manage a whole orange, and I got a kiwi in my stocking instead.

So I waited till one of my brothers left a stocking unattended.

Then I sure showed him.




Now if I can just get my hands on one of those selection boxes I missed out on....

Tuesday, 28 December 2010

Christmas Round Up

Christmas was, of course, brilliant. It really can't fail to be anything else with a house full of small people. I feel like Christmas is kind of where I get my come-uppance againist the rest of the world: yes, I know that for the rest of the year other people have luxuries like time to brush hair, peeing alone, clothes free from snot and milk, sleep, sanity and a social life, but Christmas is where I kick ass. Even though a communal bout of flu in the first week of the holidays and a nasty poke in the eye on Christmas Eve threatened the occasion, nothing could really take away from the magic.

The best house on our post-recovery Christmas Eve Eve Christmas Tree Drive-By (now there's an easy way to get them out without really having to get them out):




Our first Christmas Eve Christingle service:


 Christmas Eve magic (not sure who gets more excited at this part, me or the children):





Christmas morning jumping in our beds to open their stockings (it's not the best shot because they don't look very excited, but they were - I just don't want to spend so much time trying to get a great shot that I miss the moment - that's my excuse for my rubbish photography!):



The rest of Christmas Day and Boxing Day was just as it should be; about friends and family. My fabulous husband cooked up a storm for Christmas dinner, we had lots of fun with friends in the afternoon, then we headed to Preston to be with family. It's the most exhasuting and best two days of the year, every year.

Hope you had a fantastic time too!




Tuesday, 21 December 2010

Drawers

When I went to buy advent calendars at the end of November, I was thinking about the cost and where they would go. Last year we had to shove them in a high cupboard because two-year-old Rocky couldn’t possibly keep his fingers to himself and kept trying to rip them all open as soon as everyone’s back was turned. We don’t have a high enough shelf to place four advent calendars (and it would be five of them next year) due to his non-human climbing skills, so I decided to buy this instead:


My first thought was to put four treats in each drawer and place it up high, but then I realised the drawers were actually too small for that, so that inspired an even better idea.
Every morning after they are dressed they get to open the drawer and read the note inside. It tells them what their Christmas activity for the day is – which ranges from the nativity play at school, to writing Christmas cards, to dancing to Christmas music (I like this particularly lazy one). But it also has a clue to where their treats are that day. If it’s Rocky’s turn to ‘read’ it, I just draw a picture of a shoe, for example, but for the others I do little rhymes like ‘Four little treats, where could they be? They’re hanging on the Christmas .........?’
I was feeling particularly smug the other day when instead of a rhyme, I simply put ‘Look under there.’
‘What?’ they were saying. ‘Look where?’
They started looking under chairs, under the cabinet and under the table. Finally Turtle stood up and said ‘Under WHERE?’
‘Underwear?’ I said, ‘Did you just say underwear?’
Their faces all lit up as they realised the answer to the clue but they gave me the last laugh, as they all in unison proceeded to look not in the drawers upstairs, but in the ones they were already wearing.

Saturday, 18 December 2010

The Boy Done Good



He’s home, and apart from a bit of an ache that seems to leave with Calpol, he’s doing great J
I managed to get to Manchester on Tuesday to be there during and after the surgery. As usual, watching him coming round afterwards was horrible, watching him writhe and cry and point at the door (which was actually a cupboard) to tell the recovery nurses that he just wanted to leave. That’s the part of hospital visits when you feel like you need to pull out every single parenting trick you ever learnt, from reassurance, to distractions, to firmness, to silence, all at the right times. Not to mention pulling off those cemented-on ECG wires and trying not to look at the three canulas running into his hands and foot (I am so squeamish when it comes to those things).
However, by the time he was wheeled back up to the ward, he was sat up drinking juice, eating jelly and chatting. Soon he had downed a belated lunch and when I left at 4:30pm, he was repeatedly asking what time tea would be arriving J
Then, the biggest surprise of all, he was discharged the next evening and came home late on Wednesday, not Friday as we had anticipated J
Am I using enough smileys yet?  J

Sunday, 12 December 2010

Scooby's Syndrome: Part Three


Halfway through July, Scooby seemed to be tired again. He began to fall asleep some afternoons but we weren’t too concerned. He was only on a tiny dose of steroids by then, so we assumed his body was experiencing withdrawal symptoms as it readjusted. He had blood tests which came back normal so we just tried to ride it out. Throughout the summer he continued to be tired but still functioning fairly well, so we just tried to adapt to his needs and wait for an improvement. We managed a holiday to Cornwall, which was fantastic, and it was only in the last weekend in August when things turned bad again.
Within a few days it was clear that something had shifted in his brain. His eyesight moved dramatically again. His balance and ataxia (unsteadiness and difficulty in movement) was worse and he lost his appetite again. We took him back in for tests but they showed nothing and a few days later he began to have seizures again. He went back into Manchester hospital for a week and many of his original investigations were repeated – intensive blood tests, lumbar puncture, bone marrow, CT scans and multiple MRIs. He and Ace celebrated their seventh birthday that week, separately at first, then meeting up in the evening where we were able to take him out, canulas in hands, to McDonalds with my brother and his wife who live in Manchester.
The week after, we went to hear the results of the investigations. The good news was that the lungs were now completely clear. But the bad news was far worse - the stuff was now not only at the back of the brain but it had spread round to new areas too. The tests had not given them any positive results, even though they had sent all the information to many other hospitals in the country, and consulted with specialists on an international level, it could still not be identified. As the letter later stated; He is stuck with a multisystem steroid-responsive condition, with hints at possible immune system disturbance (elevated IgA and IgE) but no diagnosis, nor even a pattern to which this seemingly non-inflammatory multisystem disease belongs.
We came home with a larger dose of steroids to keep his outward symptoms at bay, and some anti-seizure medication, but with no idea what would happen next.
The next few weeks were very hard. The changes in Scooby’s brain were affecting his body in new and unpredictable ways. His legs would sometimes shake, his hands would occasionally stiffen into unusual shapes, he had tremors in his cheeks that would sometimes turn into small seizures, he saw things in front of his eyes, and his hearing seemed to be affected. In addition to this, both medications have a powerful effect on mood and temperament, so he had a lot of frustration and surges of hormones. Because of all these things, he could no longer go to school. He was tired, overly emotional, and scared of what was happening to him. And of course, we were all those things too.
By November, there were still no signs that anything had improved, but as with all things, time has helped us to adjust. He seems to understand his feelings now and is able to control his rages better, which makes home life a bit easier. The education board have provided a tutor for one hour a day, so he is still able to learn and have something else to focus on for part of everyday. Scooby and Rocky have developed a very close relationship, as they are together all the time (except for two mornings a week when Rocky goes to pre-school) and Scooby quite often uses their time together to play school anyway, and gets Rocky to tag along.
And we’re hoping next week may bring something positive. Tomorrow, Richard and Scooby are going back down to Manchester and on Tuesday, he will have a brain biopsy. Obviously, we’re not thrilled about any brain surgery, no matter how minor, nor that it is so close to Christmas, but it is one more chance that they may discover what is happening inside his brain before it spreads any further.
So we would really appreciate your prayers that everything goes smoothly, and that he will back by the end of the week so we can carry on enjoying Christmassy things together.
Thankyou for keeping up if you’ve read this far and I’ll keep you posted about how things go!!


Tuesday, 7 December 2010

Scooby's Syndrome: Part Two

Although we knew it wasn’t over, we thought now that Scooby was out of hospital having left part of himself to be experimented on in various hospitals around the country, we would soon hear some news of what was to happen next.
In the meantime we had no idea when to expect our next big event – the birth of our fifth baby. I was home but still no use to the family and in great pain again trying to get around in our three storey house. Thanks to an amazingly understanding consultant at Lancaster, who saw how bad the state of my pelvis was, and heard our plight about Scooby, I was taken in five days after coming back from Manchester, and on 25th February 2010 our baby girl was born J


I spent two nights in hospital with her and came back on Saturday 27th – and Richard took Scooby back into the same hospital that night. We knew he wasn’t right, he was beginning to look extremely thin and was too tired to cope with anything. Finally the disease seemed to be catching up with him, and over the next two weeks he began to deteriorate. He stopped wanting to move around and struggled to do simple things like gripping a pencil so he could write. Multiple blood tests and observations were made, but by the third week he was so weak he had virtually stopped eating and communicating – and for Scooby, who has chattered incessantly since learning how to talk, this was extremely serious. Wondering whether he needed perking up by being around family (as I couldn’t take everyone down to Manchester by myself yet), he was sent home for a weekend. We were very excited to have him back, but as soon as he was home, it was clear it wasn’t working. He was overwhelmed by the noise, and needed to be carried up and down the stairs by Richard. It was like they had sent home the frame that used to contain him, but Scooby himself wasn’t there. The next morning we thought he was watching TV when we realised he wasn’t looking at the screen but a few inches below it and his face was tremoring slightly. We couldn’t get him to respond, so we rang an ambulance. He had had an ‘absence seizure’; rather than jerking and shaking, the body goes into a rigid, trance-like state and the brain is unresponsive.
Up until this point, the doctors had been reluctant to intervene with any treatments as there was still no diagnosis, so they wanted to see what the development of the actual symptoms were, rather than masking them with medicines. But now he was seriously ill and they had to start to intervene. He was put on a nose tube to be fed, and started on a very high dose of steroids. They could see an immediate improvement, and so after a couple of days were able to release him back home, armed with masses of medical equipment. It was the end of March meaning he had finished his second month-long hospital stay of the year.


His progress was incredible and after just ten days he was able to come off the nose tube. The steroids gave him a massive appetite so he put weight on immediately and was soon heavier than he had ever been, to our amazement. The only glitch was at the end of April, when everything seemed to be going well, he suddenly had another seizure – an active one this time, with shaking and jerking, and it needed medical intervention to stop.
We were pretty taken aback by this, but doctors reassured us that children often did have single episodes of seizures after a lot of internal changes and medical stress, so it was too soon to know how significant it was. It reminded us though that Scooby still needed a lot of care even if he was looking healthy on the outside.
He was able to go back to school for most of the Summer term, which was brilliant. Thankfully Scooby has always loved school and learning, and so he threw himself back into it. He probably missed about one day a week through various appointments in Lancaster and Manchester hospitals, but the rest of the time he seemed to be doing so well that his teachers were really pleased. He got a good report at the end of June from the hospital, and scans showed an improvement in his lungs, although the always hard-to-read MRI was unsure about changes in the brain.
All the time, Scooby was gradually being weaned off his steroids. Although they have done amazing things in him, they have massive side effects and are only supposed to be a temporary solution to a problem. We were satisfied that they had given his body the boost it had needed to fight whatever was going on in there and things seemed to be on the mend.

To be continued (unfortunately).....

Wednesday, 1 December 2010

"Punctuation"



Year Two are currently focusing on writing stories, and more specifically – punctuation. Ace likes to put his own slant on things and his teaching assistant has been very amused that he decided to take her advice on spaces literally. He now uses the visual aid she gave him – a picture of a finger in between two words to show how big the space should be – as a model, and is carefully drawing a picture of his finger between each word he writes.

That’s what’s known as backfiring, and the main reason I don't homeschool.
Personally I am getting even more amusement from his special use of air quotes, as he keeps randomly adding them to his conversations.
Mummy, I love these “sausages.”
When are we “going” to go outside?
I don’t think he likes “that”, do you?
It’s funny anyway, but even more so because it reminds me of this scene from one of the funniest episodes of Friends ever (and I do know, because I have devoted years of research to it):
http://www.youtube.com/watch?v=bW8OkSJvhvE