It's an interesting life.

Well, it's all go here!
My day off (of course) and Ashley went to Nursery this morning all smiles. An hour later we got a call to say he has Chicken Pox. So he's home for a week. The baby's ok (she has her Mum's immunity for 6 months or so) and we've all had it.
Ten minutes ago we got a call to say Gill's Mum has been rushed to hospital for chest rays - suspected collapsed lung.
So I'm making tea tonite.
New rota starts tomorrow morning at 6. Wish me luck!

First steps

Ashley has Developmental Delay which means he is basically like a 38 pound one year old.

Because of this he has been Statemented which means when he starts
School Nursery in September he will have a Carer and equipment to help
him thrive in a mainstream school.

Today we met with the Head of Infants, his carer-to-be, our Portage
worker and the town’s Special Needs Coordinator to start the planning
for his induction later this term and his first few weeks in September.

I won’t bore you with the details but I will say that although the
meeting was very productive (the Head of Infants is a remarkable
woman!) it was also very difficult.

As parents we have always been fierce in protecting Ashley from
unnecessary treatment, rough handling, long days in hospital etc. Today
felt a little like we were delegating some of that responsibility to
these people. As such we have to be sure that everything is up to
scratch. So it was difficult.

However, one day in the long distant future Ashley will hopefully be
independent and we have to work towards that. September will be a step
on that path.

Lazy Sunday

It's been a good week with Ashley showing some real development and my job due to change.

Gill arrived to pick Ash up from the Nursery (he goes twice a week now) to be shown a video of the little guy standing at the sandpit. The significance may be lost to anyone who hasn't followed his progress over the last 33 months. We had an inkling that things were 'on the move' when he started pushing up from his 'commando crawl' into a hands and knees position a few weeks ago. He went to an upright kneeling position against the settee and now this.

To say we're glad is a little bit of an understatement. Although he's not talking yet and still eats mush, this is a crucial point in his development which can only indicate real progress and hope for the future.

Work is changing. A new job on the booze aisles will see me starting early each morning and finishing in time to pick the girls up from school. It will really enhance our family life and help lift some of the weight from Gill's shoulders.

The mobility car in September ( a Zafira 7 seater I think) will put the shine on things too.

Sorry these blogs are a bit sporadic but family and work life is a bit hectic at the moment and sleep at a premium with little lady only just settling to good nights after 11 weeks.

Trust you're all well and happy.

Talk soon.

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We're back!

After a very long “conversation” with Talktalk, we’re back.

Cerys Emma was born on the 16th February at 2:44 am at 7 pounds 14 ozs. First water to baby emerging took a superfast 3 hours.She is gorgeous (of course) and developing well. Pics to follow.

Ashley is now not only on all fours, but also starting to inch forward - a proper crawler at last!

We’re getting a Vauxhall Zafira in September as aprt of Ashley’s Mobility Package. Can’t wait.

The girls are fighting fit and loving life and me and Gill are good.

Sorry about the 3 month gap but we knew Talktalk would give up eventually!

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Quiet weekend

Part of the joy of being a bulging household is the large number of things that happen all day every day. You don't really notice all of them but the noise and mess morphs slowly in the right direction.

Since Friday lunchtime all these things seemed to have happened:
I built a full-sized bed for Ashley;
I apinted the living room and touched up the stairs;
Heather went to Brownies;
Gill got an evening away from the turmoil;
Gill spent a day in Oldham;
the girls have gutted their room (oh boy did it need it!);
Everyone got a bath;
both living rooms got cleaned and vacced;
a friend and her kids spent the evening;
we all had a meal out;
me and the girls watched a Harry Potter
I got my haircut;
all the homework was done by teatime Friday (house rule);

Sunday night and Gill's sorting through a bag of clothes for Ashley.

It's all go again tomorrow. Ashley's in the Nursery and has a Portage (physio) session in the afternoon and Tuesday his Occ therapist is coming to see us.I'm working the afternoon tomorrow (no manager so we should get some work done haha). The week's fairly quiet what with the due date looming.

Hopefully this time next week we'll be SIX and we'll start working Clinic visits and Health visitors into the mix.

It's a busy and I LOVE IT!

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Proud Daddy

Early home from work so spent the afternoon making a full size bed for Ash.

My daughter's just swum across the pool (10m). So proud.
Should be good for show and tell at Brownies tonight.

Jo's fallen in school and has a graze on her cheek.

Homework's being done before friends arrive at 5:30 (fellow Brownie).

Have to collect Ash from Nursery in a bit.

No news on the baby front.

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A bit of progress.

Ashley has been showing a bit of progress just lately. A year ago when this pic was taken he couldn't hold himself in a sitting position and spent most of his time staring at his hands.

Just recently after huge amounts of physio and a new course of Growth Hormone and Thyroxine the wee man is beginning to progress.

He has been commando crawling for a while but is now pushing his bum up a bit and even pushes up onto all fours (that got a cheer the first time he did it!) He's reaching up to get things off of tables too.

This evening he's showing us his Strongman Act. Big Sis (8) was googling for Dragon pictures and was sitting on a swivel chair (feet a-dangling) Ash managed to reach up and grab the back support and start swinging her left and right. Later he crawled to the double pram (Phil n Ted's 3 wheeler) and was shoving it back and forth laughing as he did it.

The docs at St Mary's in Manchester saw him today and said he'd grown a lot since starting the drugs in December. He's longer and heavier. We had expressed doubts about too much GH but they've assured us he won't become a new Andre the Giant!

Our real concerns lie with his sleeping. Just lately he's been sleepy an hour after getting up. They think he might not be producing Cortisol ( a hormone that reacts to stress) and did some more blood tests today. I think C helps him establish a daily slepp routine.

Anyhoo, they're all in bed and i'm off to Little Tesco for some shopping. Aah, the joy of Parenthood.

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Back to work

Still waiting for the new arrival.Gill's back is bad with all the Braxton-Hicks over the last week or so.

Ashley had a great day at nursery and showed them his new trick of pushing up onto all fours (so proud of him) He's shown a lot of improvement since starting to take Growth Hormone every day.

Work was good with tons to do whilst being pleasant to some really daft customers. Only had a half day to work so it wasn't too much of a shock to the system after a week off.

Hope your day went well.

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Back to work

Made the decision this evening to go back to work.
Gill's pains have all but gone for the moment. Last Tuesday we were convinced that she was in labour but by Friday afternoon it seemed it was a False alarm.
Bet you she goes into labour tomorrow morning!

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authenticating

Undergoing MyBlogLog Verification

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Ashley

I was putting Ashley's leg braces on this morning when it struck me once again what a good spirit the boy has.
He smiles.
We jab him with Growth hormone and he smiles.
We strap him into braces which bend his ankles and he smiles.
Even when he has a heavy cold he smiles.

Don't get me wrong, he has his miserable moments especially when he's dosed up with anti-fitting drugs and when he's tired.
But after hours of waiting in hospitals and being messed about by doctors, he smiles.

He has a spirit within him which will see him through. He makes great eye contact (forced by poor peripheral vision) which is very endearing to strangers. This means he always has people saying hello, and remembering him. It's almost like a Fan Club when we visit the local Asda Walmart!

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Still no baby

We're still waiting for the arrival of baby number 4.
The initial twinges, although regular, were deemed to be Braxton Hicks.
Ashley's making progress - he's pushing up onto all fours now (h'ray!)
Made myself useful today unblocking a toilet (yuck)
Mum dropped in with a bundle of clothes for the kids.
Steak puddings for tea (yum)
Nothing to do but wait...

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'ere w e go again!

Gill started slow labour as I recovered from my illness on Tuesday night.

Slow isn’t really the word. Ponderous, glacial, I think they’re nearer the mark!

I phoned into work on Wednesday to start my Paternity leave and we’ve been watching paint dry ever since. It’s torture.

They (the contractions) have just started again now on Thursday night.

Don’t think we’ll do all this again.

Maybe.

: )

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Happy New Year

Ashley had a Big Seizure on Wednesday evening which ended up with him in hospital for the night. It seems his condition means he's more susceptible to febrile fits.

The middle line of his brain isn't developed fully and this includes his Hypothalamus which controls body temperature.

The little man is developing a catalogue of "challenges" linked to this condition which we will help him face as he grows up.

Any body reading this?

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On the 8th Day of Christmas ...

First Day of a new year makes you reflect a bit (and start new blogs!)

I'm 44 and have 3 kids with another due in Feb. We've spent most of the last 2 years in hospitals around Manchester with our son. He has developmental delay and has 3 medications per day.

My job's adequate and my marriage is solid.

I'm aching to write a book about our hospital experiences but never find the time.

Does anybody still read and comment on blogs? My last two have dies a death.

Anybody out there?

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