Living with a child with a health condition

When Maxi was 4 months old he became unwell.  He got a cold and was very unhappy, not his normal self at all.  He also fell off my knee and we were so concerned we took him to A&E at 6pm.  The doctor took a look at him and said he was fine and just to keep an eye on him and bring him back in if he was being sick.

Maxi on the afternoon before he fell off the sofa

We put our little baby to bed at 8pm that night and tried to give him a feed at 11pm, as usual, but he wouldn't take the milk, in fact he didn't cry, he was just struggling for breath.  We decided to ring the out of hours GP service and the doctor was with us within 30 minutes.  Within 2 minutes of entering the house, he told us to out our baby in the car and to drive straight to A&E.

He took our house keys and said he would lock up and meet us there, that there wasn't time to call an ambulance and we could get him there quicker.

A doctor and two nurses met us at the door to A&E and rushed our baby in to a cubical and then all hell broke out.  Maxi was ventilated and a cannula put in.  He has wires coming from his foot and finger and was put on a heart monitor too.  I have never been so scared since the crash section 4 months previous when we thought we were losing him.  
Maxi on CPAP in the HDU at Royal Berks

Our baby was moved to the high dependency unit as the Royal Berkshire doesn't have an ITU and we started what was our long long Vidual.  Maxi was suffering with breathing difficulties and they couldn't figure out why, he didn't have an infection, it was the middles of the summer not the bronchiolitis season, they were flummoxed.  Instead of getting better, our little baby got worse and was transferred to ITU at Great Ormond Street, it was suggested that we get him christened.

We didn't, he started to improve, we returned back to The Royal Berkshire High Dependency unit and began the long recovery, he was tube fed, changed on to nasal cpap and gradually got better.

A month later we did it all again, bar the Great Ormand Street part, as we managed to deal with it at the Royal Berkshire.  1 day after he was released we dashed down the M1 and had a joint christening for Maxi and my Niece (we basically hijacked their prearranged day), thanks to my wonderful sister in law, who arranged and planned everything.

Maxi's Christening

This became our life for until Maxi turned 3, we couldn't go a couple of month over winter without an admission.  We had over 10 sweat tests for cystic fibrosis, each time the results were in the grey area or there wasn't enough sweat to test.  Finally we for a negative test, we were overjoyed.  We were very lucky that we had a super Consultant, who agree that we needed to take some steps to prevent this happening.

So Maxi underwent numerous blood tests  and other tests and it was discovered that his specific antibodies were virtually non existent.  So Maxi underwent six months of re immunization and also had additional immunizations and guess what.  It made a huge difference.  He no longer picked up every virus going.

We have actually gone an entire winter without any hospitalisations.  It is wonderful.  We are able to manage his condition at home, which is wonderful.  He has done a whole year in Reception Class without one absence. 



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The Benefits of Play

I was invited by Pampers to come and look round their never ending world of play exhibit at the Metro Centre and to meet Pampers play expert Professor Dieter Wolke.


To be honest the interactive exhibit was pitched at children much younger than Maxi and Mini, so I bought them a slush each and we sat down to chat to the professor about why play is important and also the difference in play of boys and girls.

Firstly as a mum of two boys, I asked about the fact that the boys will always turn something in to a gun or a sword, they will build one from Lego, use a stick or even just use their hand and make the noises, should I be worried about this?

The professor reassured me that this was perfectly normal for boys and even children of pacifists will engage in this type of play and it is nothing to worry about or intervene with.

I also asked about developmental and educational play, as I am concerned that these terms are banded around so often at the moment.

All play is educational and you should be led by your children with the type of play that they enjoy, so if they seem to love dressing up, then dress up with them.  If they like to copy mummy cleaning, then get them a small cleaning kit and let them join you.

Play doesn't need to be end specific, children should be able to just enjoy being to see where it takes them.

A lot of this is just common sense, but as a mum I do know that sometimes you do worry.  I worried that the boys didn't get tummy time and other types of developmental stuff when they were small, but when you have 2 children in fifteen months then you learn to let go a little.

What is your child's favorite type of play?


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The Gallery – A Memory

This weeks prompt for The Gallery is A Memory.  I have thousands of photographs and each one is a precious memory in its own right, which makes this week harder than most for me.

How can I pick a specific memory, just one memory out of all of the millions that I have.  

At the beginning of July we all went to London for the weekend, I went to CyberMummy, but we made the most of the weekend and made many precious memories as a family.



So it isn't the best picture in the world, yes it was very dark in the Aquarium, but we were busy making a memory for years to come and surely that is what being a family is all about, making memories.

If you want to read more about our wonderful day making lots and lots of new memories then go and take a look at the review I did for Have a Lovely Time.

Also take a look at their fantastic 20 sites for summer fun, which I also featured on.



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Mummy bloggers head to Bangladesh

At the end of August 3 influential UK mummy bloggers will be heading to Bangladesh with Save the Children to see first hand the work they do first hand. 
Sian, Mummy-Tips and on twitter @mummytips
Josie, Sleep is for the Weak and on twitter @porridgebrain
Eva, Nixdminx and on twitter @nixdminx
Every year almost 9 million children under the age of five die, most of them from preventable illnesses such as diarrhoea, pneumonia and malaria.
Why are they going to Bangladesh?
At the end of September Nick Clegg will be at the UN Summit in New York. Ten years ago world leaders set targets, called Millennium Development Goals , to reduce poverty, hunger and disease.
By going to Bangladesh and highlighting the work done, then hopefully the team can reaffirm the need for these health targets to be met.
What can you do to help?
Sign the petition to get Nick Clegg to push for commitment to the targets at the UN Summit
Donate direct to save the children
Help publicise the trip by writing, tweeting (using the #blogladesh hashtag) and putting the badge on your blog
You do not have to give if you can not afford it, but we have the chance to make a difference, to raise awareness and to try and afford change.
I am proud to know these 3 amazing woman who are going on this trip (I can not even watch comic relief without tears) and will be watching out for all their updates in the coming weeks and months.
So come on together we can all make a difference.
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Hearing but not Listening

My boys, especially MiniMad seem to have issues with listening. I and the preschool were so concerned with Mini's hearing that he was referred to an Audiologist.

Thankfully it turned out that Mini's hearing was perfect, although it took four different attempts to get him to co-operate with the tests.  You could see that he was hearing the sounds, he just refused to acknowledge them!

The Audiologist was a lovely lady who went on to explain that she sees now boys than girls and that they can hear, they just don't listen.   They tune out or focus on other things.

So what can I do about making the boys not only hear what I say to them, but also listen and take notice of it.

1)  I have been getting down to their level.  When I have something important to say I get on my knees.

2)  I gently turn mini's head to my face and ask him to listen and watch what I am saying.  I try to keep eye contact.

3)  I have been keeping it simple.  I am trying to say what I need in the least words possible.

4)  By keeping a good tone and not shouting, over lent I tried to give up shouting and it was pretty effective, but I am guilty of slipping.

5)  By rewarding listening with praise.

6)  By responding with the unexpected.

I am also going to try writing notes, especially for things that I keep having to repeat myself on. ie hanging up coats.  The boys have a low peg in the entrance for their coats but at the moment they just keep running in and dropping them, so I am going to leave a note on the door to the living room asking them to hang up their coats.

So what are your children like, do they listen to you, or do you sound like a stuck record?  How do you get round this? I would really appreciate all your hints and tips.




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Frugal Food – Utilise your Garden

One of the many comments I got on my feeding a family of 4 for £50 post was that we must be green fingered or have a lot of room for growing vegetables.

The truth is we don't and I am not, we have a small back garden, but in 2009 MadDad built me 3 raised beds, they are not large, they are 6 foot by approx 3 foot and we also have a couple of barrels that we fill with potatoes.

But those raised beds and what pots we have round the garden supply me with a steady supply of vegetables right through till the Autumn.


At the moment we have the following

Bed One - Draft Beans, Runner Beans and Pea's
Barrel - New Potatoes
Bed Two - Spinach, Rainbow Chard, Kale
Barrel - New Potatoes
Bed Three - Leeks and Onions
6 Hanging baskets + Home made fence baskets - Strawberries
2 troughs - Cucumber
2 troughs - Tomatoes
1 Container - Courgettes
4 Containers - Herbs
2 Containers - Salad leaves

Come Autumn, we will be planing garlic and Spring cabbage, we have already eaten the spring onions and all the radish that we grew.


We have grown everything from seed and have shared the initial cost of the seeds with our neighbours who also grow and friends that have an allotment.  We don't have a green house, but I germinated and grew all the seedlings on the window ledges!

We planted our apple tree 3 years ago and this year is the first year we will see many apples from it (we only got about 7 last year), but you need to bear in mind that our back garden was that of a new build - full of clay and bricks with very little soil at all.  

We also planted a pear tree and will get our first fruit from that this year, which is very exciting indeed.

Upkeep and Daily Maintenance

We bought a reduce water butt in the sales last year and we water the beds and containers every night which takes us about 15 mins , or longer if the boys help!  I also go out a couple of times a week and weed, but we don't get many weeds as we plant very close together.

Slugs and snails are our main enemy, but the boys are well trained.  If they see a slug or snail, they squash them.

I think this post shows that you don't have to have a lot of space or a huge initial outlay to start growing your own vegetables.

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RIP Mr Smudge

Yesterday we made the decision that we have been dreading making, but both knew was coming, we had to have our beloved cat Mr Smudge (our rather large and old white cat) put to sleep.

He was 15.  He was my first baby, one of two brothers that we got after I miscarried twins at 20 weeks 15 years ago.

He had been with us through thick and thin and we couldn't bear to see him deteriorate in this way and decided that the time had come to stop looking for what was wrong and let him die with dignity.  To save him from further pain, to learn to live with the pain that it meant for us.

So whilst me and the boys were out yesterday, MadDad took him to the farm vets and today we will be having a little funeral service for him, as requested by Mini.
MadDad will be digging a rather large hole in the garden and we will be laying both the cats to rest (as we lost Snowey 3 days before returning to the north east and had him cremated) in their blanket and placing a bird bath over the area.

I have to say both the boys were very brave, pragmatic and realistic about Mr Smudge dieing and being unwell.  Mini even want to see him before we bury him (we are undecided as what to do about that yet).

The thing is my heart is breaking.  I keep imaging I am seeing him round the house and I guess that feeling wont go away any day soon.


RIP Mr Smudge
June 1995 to 13 August 2010


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Wordless Wednesday – A big Thankyou


Just look at this wonderful drawing I received from the very clever Suzie over at Itch 2 Stitch.  We adore it and have framed it and popped it for all to see.



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Mini(isms) Part Two

Mini has the ability to make friends wherever we go, which I assume is is partly down to his generous and happy nature, but also down to the fact that he is just so............................ unique!

We went to an adventure playground the other day and there were loads of older children there, Maxi went go off and played solitary on the monkey bars etc, but Mini threw himself in to the centre of the most dangerous games with the big boys.


Often I am not partial to the conversations that take place, but this time one of the older boys came over to tell his mum about this "super little boy they were playing with".
Big Boy "He is so funny mummy, he told us he has a pet mole and his mummy is dead"

Big Boys Mummy "Oh poor thing, which child is it?"

Big Boy "That one with the curly hair and glasses"

Me "Oh that would be Mini, he is mine and I am his mother!"

Big Boy "Oh, he also said he has a brother and wants a sister and is friends with the half inside out people who live on the high street"

Me "Oh yes, that is Mini, he has a very active imagination, think nothing of it"

So this is Mini, the half inside out people are his imaginary friends call Dave and Vic.  They have been around for about a year now, although the pet mole is new to me!  He has always wanted a sister, in fact both the boys talk about how they will get a sister all the time!

But I do feel the need to shout out HE HAS A MOTHER, I AM HERE.  I AM ALWAYS HERE!

But who could resist him, he is just adorable!



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Fresh from the Garden




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