The Perry Family Blog

Almost a year

2009-08-09T12:02:00.002+01:00

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Well it's been such a longtime since I last wrote. I've had a crazy time at work which has really meant I've had very little time for anything really!

Last October we took Matt to the Bobath centre for a couple of weeks of treatment. That place is fantastic: they really got some fantastic results, loosening Matt and they really seem to understand how best to handle and treat him.

They set up a program for him which we have been following ever since.

It's been almost a year but Matt's head control is improving, he is learning to sit well (with help). We are very keen to ho back again this year too.

Our local health service have been fantastic too; Lisa, Sue and the team have built on the suggestions made at Bobath and they really get on very well with Matt.

James is growing up fast too, a very cheeky little boy. Emily is almost 6 now and very excited to have her first wobbly tooth!!

Well, this was something of a test post from my iPhone; if it works, maybe ill write more often!

Adz

Matt eating

2008-09-15T18:25:00.004+01:00

This will have to be a very short post as I am sooo busy right now :-)

Matt has been really difficult with eating for a couple of months now. It takes over an hour to feed him, he won't eat anything (but desert - yoghurt!). A while back he learned to drink from a cup, but now he uses that as a way of preventing you putting any food in his mouth!

Well we have tried numerous tactics, sometimes feeling extremely cruel.

We have even had the community feeding team in to advise on what to do - 8 or 9 people stood round him with a clip board, watching him eat.

We've now decided that if he refuses to eat, we'll just let him get hungry. It's really tough for us to do this to him because he can't communicate as well as James, or Emily - but we think its time to give it a shot.

So, last night, he went to bed having refused both lunch at dinner.

And he refused to go to bed because he was hungry...

So, we got him back downstairs and he wolfed down his dinner without any problems. He had the naughtiest look on his face - mischevious, he knew that he had lost a minor battle. Or maybe he thinks he won it.

Either way the experiment continues today.

He refused lunch so we let him go hungry.

But he ate dinner... so this technique seems to be working.

The best news is still to come though: As a treat, when he eats well, we give him chocolate buttons. They are larger than the standard cadbury ones so he could hold them if he wanted to.

Today he actually picked his food up and fed himself!

This feels liks such a huge milestone for Matt: its a small step on a journey to him having some independance.

Gem managed to capture it on her phone camera. Not fantastic quality but a huge moment for us.

And the next attempt

Holidays

2008-07-26T22:15:00.008+01:00

We've been having a lot of holidays lately which is unusual for us! We spent a week on the Isle of Wight in a Caravan; Gemma went away for a long weekend with her friend Jules; and she is away again this weekend on a Hen weekend.

It was great to get away to the Isle of Wight for a break. The weather was terrible but we still managed to do quite a bit, visiting dinosaur worlds and a family favourite, Black Gang Chine.

The Chine is very hilly and it was hard work pushing Matt around in his new ten-tonne pushchair. We got the new chair about a week before the holiday and Gemma pulled something in her back just in that first week - it is so heavy to lift!

I've since discovered a way to dismantle it when loading into the car but even then you are left with 2 heavy pieces of chair. Still it's a solution and it works!

We later went to Carrisbrooke Castle which the kids really enjoyed. I think James quite liked the cannons and they all loved the donkeys. Shame it was spoiled slightly when the cafe complained because we fed Matthew food which we had brought with us. He certainly would not have been able to eat anything which they had for sale!!

Gem went away with her friend last weekend (and this). It really is amazingly difficult to look after James, Emily and Matthew and to somehow find time to perform the huuuuge list of physio and educational tasks we're supposed to help Matt with.

In fact, on the one occassion I was able to fit it all into a day, Matthew just got so tired that he fell asleep, completely exhausted. But its been great to actually spend some time with the kids for a change! Matt and I played 'catch' while he was in his standing frame. I took a video on my mobile phone - but it's a naff phone and the quality is awful!

I shall be upgrading to an IPhone as soon as I can...

Thank goodness my parents live close by and can lend a helping hand, they have helped out loads. Emily is sleeping over there tonight so I just have the boys to look after: but it's the boys who tend to wake up in the night! :-)

My turn for a holiday next weekend: My best friend's stag weekend. It'll be fun, but bad news for my liver!

1...2...3...4...5...6... ...8...9...10

2008-06-10T20:45:00.005+01:00

Its been a busy couple of weeks for me. My new job is taking up a LOT of my time, what with trying to take a crash course in .NET while still being productive. But thats a topic for my other blog!

I was away last week in Copenhagen with work at CodeGarden 08, and while I was there Matthew picked up a couple of new tricks!

First, he has started counting to ten. Almost; he can't say seven - but it was amazing to realise that he has picked this up as we have not been consciously teaching him.

He also grasped "up" and "down". Not only does he say it, but he definitely understands as he will take my hand and raise it "up" and "down". Fantastic!

Matt's speech therapist is coming on Thursday so I am sure she will be pleased.

Well I am off to Wolverhampton tomorrow am going to relax for a bit and get an early night.

Until next time!

If at first you don't succeed...

2008-05-28T22:56:00.007+01:00

Well its almost 3 years since I wrote in my blog. And an awful lot has happened in that time!!!

Emily is almost 5 and is at school for starters.

But in this first entry I want to talk about our twin boys. In March 2006 our twin boys Matthew and James were born, 3 months prematurely. It was an absolutely awful time for us, the boys were so tiny, just 2 and a half pounds. To make matters worse, there was no room at the local hospital, so the boys were shipped to Hackney while Gem had to stay at Basildon.

James, left, and Matthew, right

When Matt was a couple of days old, he had serious problems and suffered IVH which caused his lungs and brain to bleed; it took over an hour for the staff to bring him back and during that time he stopped breathing; he didn't breathe for 25 minutes at one point. We were told that normally, they would have given up after 15 so it really is a miracle that we have Matthew at all.

NICU is a rollercoaster ride at the best of times, the boys would have breathing problems, or infections, every day was a challenge for them.

After a few weeks the boys were transferred back to Basildon Hospital; but shortly after that Matthew had to be sent to Bristol to see a specialist there. We spent about a month in Bristol, while James stayed in Basildon; Gemma and I were split between the east and west of Britain. Matt had an experimental treatment which we hoped would prevent him from getting hyrdocephalus. The brain surgery and recovery took about a month; but eventually he was sent back to Basildon hospital.

Matthew was only 6 weeks old when we were told he has Cerebral Palsy. He suffered a lot of brain damage and even now we don't know to what extent he will be affected by that.

The boys eventually came home at the end of May. While they were in hospital we had moved house, and (with a LOT of help from our family) we had completely redecorated. The house we had bought was pretty much gutted and we spent about 6 weeks getting it ready for everyone to move in.

It was great to get the boys home but that was not the end of the story.

When the boys had been home for a couple of weeks, James stopped breathing. It was in the middle of an amazingly hot June, the boys had been having trouble coping with the heat.

James went completely purple, like a bruise. Fortunately Gemma and I had received CPR training before the boys came home and we had to put it to use: It took around 5 or 6 minutes to get James breathing again. The ambulance arrived in 7 minutes.

Baby CPR was bizarre, James only weighed around 5lbs, maybe a bit less, so you pretty much cover his whole face when you breathe air into his lungs and you have to use two fingers to push up and down on his chest.

Gem was amazing. She swept everything off the kitchen table in one motion and I began the CPR; Gem took over and somehow brought him back to us.

Those were the longest 7 minutes of my life.

It turned out that James had caught a virus which affected his breathing. It transpired that Matthew had the same virus but we caught it early: his lips were turning blue while he fed so we took him into hospital. No one believed that both boys would have the same symptoms, but we refused to leave and eventually a nurse saw him start to turn blue and they admitted Matthew.

It took a week for the boys to get over the virus but it was nasty. They would stop breathing regularly; every hour, or every half an hour. There was only one resuscitation kit on the ward, and there were 3 children in who had breathing problems. Someone had to keep an eye on the boys at all times, there was no time to sleep.

The staff at the hospital were fantastic, with one notable exception: one nurse was very blaze about things and didn't believe me when we told her that Matt wasn't breathing, I had to call other nurses over (quite urgently I might add). All she would say was that the machine said he was OK. The machine was wrong.

Once home, the boys were fine until around Christmas time. They got ill, just like other kids do; but nothing out of the ordinary.

Matthew began physiotherapy for his cerebral palsy and we would attend sessions weekly or bi-weekly to learn how to push and pull him about. Physiotherapy: it's nasty; some of it hurts and irritates Matthew, and makes him cry, you really have to learn to harden yourself to it all, which is so sad.

Anyway, around December we discovered that Matt's hydrocephalus had returned. He had scans and tests and eventually went back to Bristol for an MRI scan which confirmed the problem and suggested he would need a shunt.

We had an appointment booked for an operation in Bristol but as always, Matt had his own timetable. He became seriously ill and had to be admitted to hospital. He was shipped by ambulance to Great Ormond Street where he had his first shunt fitted.

He was home within a week, but as soon as we got him home he started having fits; another ambulance was called and he was returned to Basildon Hospital.

The first shunt failed after a few weeks. We thought it had blocked, but in fact it was worse: part of it had fallen into Matthews brain.

He had to go back to Great Ormond Street where they literally fished the piece out; the hole they had to cut in his skull was horrendous, a couple of inches long and half an inch wide. But they got the shunt out and fitted a new shunt.

Matt returned home again; but it wasn't long before he was ill again. The new shunt was infected.

Back to Great Ormond Street; and this time they removed the shunt and gave him an 'external' version. He was very ill and took a very long time to recover.

By May, Matthew was home, and has remained home ever since.

So, he has been home a year now, and we are almost a normal family again... James has been fine since his incident where he stopped breathing, in fact he is a little terror and into everything!

It's just the constant attention we get: physiotherapy, occupational therapy, speech therapy, sight specialists (this is the abridged version of the boys start in life, there were actually lots of other bumpy rides along the way!), social services, special education teams...

Today we had Matthew's physiotherapist and occupational therapist round to video Matt. They are planning to get him a special suit which will help him to control his muscles a little better and the video is part of that process.

We also had a friend over: Lynsey, and her twin daughters who spent the first few months of life in the beds beside Matthew and James, 2 years ago. They have an older daughter called Millie so Emily had someone to play with as well!

I think thats it for a (re-)introductory post. I wonder if it will be another 2 or 3 years before I post again...?

Emilys 2nd Birthday at Colchester Zoo

2005-10-13T23:43:00.000+01:00

It was Emily's 2nd birthday on the 25th August 2005.
We took her to Colchester Zoo with her nan, and with her friend Beckie. Beckie's mum, Stella, came along too...

We took some photo's while we were there.

See some photo's of the trip.

Emily and Katy

2005-10-13T22:22:00.000+01:00

Just the other day our daughter Emily saw an advert for Oil of Ulay on TV. She thinks the lady in the ad looks like our friend Katy, and keeps pointing at the lady saying "It's Katy... It's Katy..."

You can judge for yourself below:

Introduction

2005-10-13T21:57:00.000+01:00

I love using Linux/KDE/Mepis - and here is Konqui, the dragon who is the mascot of the KDE Desktop.

Linux, and MEPIS Linux, is surprisingly easy to use. It has great software available - for free - including chat clients, word processors, spread sheets - and is fully compatible with Microsoft Office.

There is a great community and the Mepis Lovers website provides a great source of help and ideas.

Plus, who could forget Firefox - a fantastic web browser.