Friday, May 27, 2005

Been away

For a couple of days!! Woo Hoo for me!!

I left DH in charge and disappeared to my Mum's for a few days, and can I say it was wonderful, having to think about nothing, just for 48 hours!!

I've been re-charging the batteries and had a wonderful time!!

I got back today, so am still a little unorganised. Added to which DH has re-booted the computer whilst I've been away, I think it is going to take me a while to find everything again, as he didn't save my favourites before re-boot!!

Also half-term started around here today, so things might be a little quiet around here for the next week, as my access to the computer is fairly limited when there are children in the house!!

Be wonderful if the weather stays the same though! Anyone know what the weather's supposed to be like next week??

Tuesday, May 24, 2005

Channel 5

The Boy with an Amazing Brain

Channel 5 showed the most amazing programme last night, it was about a Savant, he could work out math's problems to hundred decimal places. Apparently pie was his favourite number, and it sparked some interesting brain wave results when the put in numbers that shouldn't be there.

The advantage he has over most savants is, that although he has some characteristics of being Autistic he is still able to communicate with other people. Apparently he is a scientists gold-mine in that he is able to describe to scientists how he see's numbers in his head, he describes them as a landscape, and he is able to read the landscape. Every number has a shape, and apparently when you multiply one number by another he see's 3 shapes, the one in the middle being the answer. The aim of the programme was to look at his amazing abilities to see if he is a genuine savant or if he has trained himself in someway. The final test was to learn Icelandic in a week, which is an extremely difficult language to master....and he managed it!

Part of this programme were two other savants, one who could draw the most amazing pictures at great speed, he was quite severely learning disabled/autistic, and could not communicate other than through his drawings, which were quite simply stunning.

Then there was the guy who the character Rain-Man was based upon. He was lovely, he too was quite simply amazing......funny thing was at one point he actually looked like he was reading the telephone directory! Not sure if that was a pun thrown out at the film!! Shelley pointed out this morning that he looked as if he was reading two different pages at the same time, but again the most amazing memory.....apparently he retains everything he's ever read.

They had a specialist in Savants on the programme last night and apparently there are only 50 known world wide.

Monday, May 23, 2005

Be interested

to know what you think to this:-

Cord Clamping injures the brain

Bad Blogger!!

I can't believe that it has been almost 2 weeks since I posted anything on here.

What have I been doing??? Well I have to admit the week before last was a bit hectic with the amount of building work going on and having to spend some time out of the house in order for them to fill the foundations.

This was the view out of my front door one morning week before last. Its a concrete pump, and I have to say it was absolutly fascinating to watch. It was huge!!

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Last week however was very quiet, no builders, due to a hold up with the floor, so I've kind of spent the week relaxing and doing as little as possible!! Nice to have some time out every now and then.

Sunday, May 22, 2005

Eating Disorder

Michael has a swallow disorder, pharyngeal stage swallowing difficulties, which basically means that he has an abnormal swallow reflex. He had a videofluroscopy done, at GOS Hospital in London. The video showed that Michael stores food in his mouth, and when it hits the back of his mouth/throat his swallow reflex is absent, so Michael literally has to slide food so far down his throat before the reflex actually kicks in and takes over.

This has left him with major problems when it comes to lumpy and solid food. Anything he eats orally has to be a smooth consistency. Lumpy and solids when they hit the back of his throat set off his gag reflex, and result in him vomiting.

We have struggled since Michael was 11 months old to get him to eat anything other than pureed foods. When we moved onto second stage baby foods, the lumps would hit the back of his throat and make him gag, and vomit.... He then became aware enough to know that what he was eating in no way resembled what the rest of us were eating, so he had a plate of pureed and a plate the same as everyone else.... but it wasn't long before he practically stopped eating altogether.

Over the last 4 years the only things Michael has been able to swallow sucessfully have been yoghurts, soup, melt-in-the mouth foods, such as cheese puffs, weetabix, mashed potato, with lots of gravy, he does like his gravy my son!! Anything he has eaten has had to be soft and almost puree texture. So for him to take a 'solid' boiled egg, and to remove pieces small enough for him to be able to chew and swallow is amazing!!

I am eating a boiled egg

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Saturday, May 21, 2005

Tuesday, May 10, 2005

Woo Hoo

I got a great big, arms thrown around.....spontaneous hug.

Michael came home from school today, DH collected Michael from out of the taxi, he walked into the house and then came into the living room yelling "Mummy" wrapped his arms around me and gave me a great big hug!!!!

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Saturday, May 07, 2005

Blood test for Autism??

Hope over blood test for autism

Scientists in the US say they are getting closer to developing a blood test for autism.

The disorder is generally diagnosed through a series of behavioural characteristics, when a child reaches two-years-old at the earliest .

But the UC Davis MIND Institute in California has identified key proteins and cells within blood which could be used to diagnose newborns.

However, it could be another 10 years before the test would be available.

More than 500,000 people in the UK are thought to be affected by autism spectrum disorders, which limit their ability to develop friendships and make it hard to understand other people's emotional feelings.

The incidence of the condition appears to have risen sharply over the last 30 years. Nobody knows why this is and it is possible that more cases are simply being diagnosed than in the past.


Lead researcher David Amaral said the US test would represent a real breakthrough, allowing people with autism to receive treatment and support much earlier.

"Finding a sensitive and accurate biological marker for autism that can be revealed by a simple blood test would have enormous implications for diagnosing, treating and understanding more about the underlying causes of autism.

"Not being able to detect autism until a child is close to three-years-old eliminates a valuable window of treatment opportunity during the first few years of life when the brain is undergoing tremendous development."


In a study of 105 children - 70 with autism, and 35 without - the researchers found those with autism were more likely to have a certain set of proteins, small molecules and cells, including natural killer cells.

They are now conducting a full evaluation of the data, which could take months, to help confirm the initial findings.

The team would then need to see if the test is accurate on newborns, meaning it will be another five to ten years before any definitive diagnostic test would be available.

Richard Mills, director of research at the National Autistic Society, said the research may "throw light" on the causes of autism.

And he added: "We particularly welcome any credible development in early detection as early intervention is the key to the development of a person with autism.

"This confirms that some underlying conditions associated with autism do have an organic basis, which can be detected at birth and which are responsive to biomedical intervention."

Friday, May 06, 2005

Being a Preemie Mum

There has been some discussion on a couple of the forums that I belong to, about the effect that being the parent of a preemie has. One of the mums on one forum is doing some research into the effects of a commonly used phrase amongst the medical profession - "He'll catch up"

It got me thinking, I did a piece in Michael's website about how it feels to me, being the parent of a prem. The feeling of devastation at finding yourself thrown into this completly alien world, and how you need, and look for the support and honesty of the medical profession to help you through it.

We didn't get it, and the more I think about it, the more I think it was that one phrase, "He'll catch up by the age of two," that did so much damage.

As a parent I clung to that magic age, by the time Michael was 2 all his preemie issues would have resolved and he would be ok. So was I living in cloud cuckoo land??? Maybe just maybe I should have realised that things weren't right, and that everything that Michael was going through meant that there was no way he would catch up. But I didn't, I clung to that magic age, the closer we got to two the more apparent it became that things weren't right. So then I started making excuses that maybe we could discount the first year of his life because he'd been so sick. So maybe all would be well by the time he got to three, but as we lived through the ages of two to three it became more apparent that all was not well.

It hit home even more, when one of Michael's Consultants told me that I couldn't have a baby at 24 weeks and expect normal. When I asked why I didn't know that, he advised me that they, "didn't tell parents, only told them of the risk of Cerebal Palsy," and suggested I read the research, this whole discussion left me with an intense feeling of anger, at having been lied to and deceived. Especially given that time and time again when Michael was in NICU we had asked for information, and not been given the answers.

Later the same year, we were asked if we'd known what life was going to be like. I had to be honest and say that no-one had told us the things that we faced as parents of a premature baby. I didn't even know that Developmental Delay was a proper diagnosis, I thought it meant that his development was delayed but that he would catch up. There's that phrase again! - No-one asked if I understood what Developmental Delay meant, no-one took the time to explain it, it was just a phrase that kind of crept in when people were referring to Michael.

The realisation that your child has major issues and that you are not going to get the normal that you felt you were promised, is devastating. It's like a grieving process that you go through, because all the hopes and dreams that you had for your child and their future have been snatched away.

I think the phrase "Catch up" when referring to micro-preemies is one that should be permanantly removed from Dr's vocabulary.

The world as Michael see's it

We have a beautiful Cherry Tree in our front garden, it is huge and full of wonderful white flowers. Which as with most flowering tree's, they are at the moment, heading downwards.

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Michael is most insistent that it is snowing!!!!

Thursday, May 05, 2005

Wednesday, May 04, 2005


Michael had his MRI in January, I know we've been and discussed the results with the Neuro, see my previous post. But as of yet we still haven't had a written report. Without the written report Michael's Community Paed won't go through the scan with me.

I thought it would be easy find the folder containing all of Michael's medical history, find the letter from GOS with his hospital number on it, ring and ask where the report is!!

This is where the fun bit starts, I've packed them - can I find them????

Urgh!! I can't wait till the building work is done and my life is back to normal!!!!

Monday, May 02, 2005

I am an old cat

We went to my FIL's today, had a lovely day, Michael brought a smile to my face this morning as we were talking about going to Grandad's, and going to see the cat's.

Michael kept saying "See kittens." So we had to explain that Grandad doesn't have kittens he has cat's.

The reply, "No Kittens, Old Cats, Like Mummy!"