Celebrate: 50 days

Today we are celebrating.

We had to give Samuel his emergency medicine Midazolam today. You may think that wouldn’t be something to celebrate, but what we are celebrating is that has been 50 days since we last had to give it to him. 50 days. Samuel’s ‘normal’ average was previously 14 days.

50 days.

We are so very proud of him. That boy is one hell of a fighter. We are so proud to be his Mum and Dad. It is our greatest privilege.

Well done Samuel. x

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Click here and share your celebration post and then grab the Celebrate Blogging Challenge badge for your blog. Don’t forget to tweet about it too using #celebratebloghop

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My previous ‘Celebrate’ blog hop posts:

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Celebrate: The diet dream has come true

I’ve been debating all morning about whether to publish this post. I’m not sure why. I mean do I really think I’ll be tempting fate or am I worried I’m just wrong? But I really don’t think I am.

I think I need to finally say this out loud because everyone around me is saying it and perhaps I just need to get a grip and say it myself.

So here goes,

the ketogenic diet is working.

There I said it. It shouldn’t be working quite as effectively as it is. His ketones are very low and not in the therapeutic range where you could say he is in ketosis. But the diet is working. It seems that Samuel is as usual making up his own rules once again.

It’s not just me that has noticed a difference in Samuel. He spent a whole day last week at Julia’s House and they were all in agreement that he was far more settled and barely displayed any of his normal twitchy behaviour. His Dad, who only seems him during evenings and weekends because of work has barely seen him seizure at all over the last couple of weeks. I’m keeping a note of all his seizure activity and it tells me that he is only having about three seizures a day and they are all quite short ranging from about 30 seconds to just over two minutes. For Samuel that is incredible.

The diet is working. It’s only a month in and I am saying out loud. The diet is working.

To spend the day with Samuel and not have to sit and watch him regularly seizure, not have to see his little body regularly twist and stiffen as he cries, not have to keep an eye on the clock in case I have to start thinking of getting out his emergency medicine – it’s a luxury, a dream, a wonderful feeling that I can’t explain.

We still have a couple of months to go on the trial before it is agreed that Samuel stays on the diet long-term. But a month in, things are looking good, very good.  My dear reader I will say it one more time. The ketogenic diet is bloody working. But if it can have this effect when his ketones are low, what can we expect when they are high? That thought just makes my heart flutter.

The Ketogenic diet is a high fat and protein but low carbohydrate diet that is used to treat difficult to control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then moved around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

More information: If you want to find out more, please have a look at Samuel’s Ketogenic journey and you can also read a round-up of all my blog posts about Samuel’s Ketogenic adventures. Matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet (and explain things much better than I do!).

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Share your celebration post below and then grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

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Celebrate: A day to remember

20120511-173350.jpgWhat happened (or not happened) yesterday may be just a one-off, never to be repeated again. It may have just been a miraculous day, coincidence, a fluke, just a bloody good day.

Samuel had NO seizures yesterday. None. Samuel can have something like anywhere between 5 and twenty seizures a day. Yesterday, Samuel had none. He has had seizures every single day of his life. Until yesterday.

Is it the ketogenic diet? Did the seizure monster just decide to have the day off yesterday?

Yes, I must admit he was a bit grumpy for a lot of the day, which I’m assuming is teething. Again. But no seizures?

What happened yesterday may never be repeated. Today, tomorrow we may have a terrible day with seizures in full force. But even if that is the case, I will always appreciate and celebrate our day yesterday.

The Ketogenic diet is a high fat and protein but low carbohydrate diet that is used to treat difficult to control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then moved around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

More information: If you want to find out more, please have a look at Samuel’s Ketogenic journey and you can also read a round-up of all my blog posts about Samuel’s Ketogenic adventures. Matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet (and explain things much better than I do!).

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Share your celebration post below and then grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

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Celebrate: 10 things

Here is a post dedicated to 10 things I love about Samuel (in no particular order):

  1. His gorgeous big blue eyes and his absolutely incredible eyelashes. When people meet him for the first time I give them 10 seconds before they notice his lashes. They are ridiculously long.
  2. His gorgeous squeezable cheeks and beautiful shape of his mouth.
  3. His hands. His fingers are like cute little sausages and his thumbs have this really cute dimple at the bottom that I like to squidge.
  4. When you cuddle him he turns into you and purrs.
  5. His knees, he has the most gorgeous, squishy knees.
  6. His toes and toenails. They may sometimes be a bit cheesy but they are so damn cute you just want to nibble them (despite the cheese).
  7. Sometimes when you move him he does this sweet stretch where he looks like a little Superman about to fly.
  8. When he burps.
  9. When he yawns and looks like he’s going to swallow up the room with him.
  10. His smell.

I could go on and on, but I think you get the idea!

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Share your celebration post below and once you are done grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

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Celebrate: Ketogenic Diet begins

So we ‘ve done it, Samuel has now started the Ketogenic Diet. As I write this, Samuel’s ketone levels are now just inside the therapeutic range, so we are heading in the right direction.

I’ve written before about how much hope I have for it to work. Even if it means we can just take him off one medicine. With all his physical ‘break through’ seizures he has combined with the seizures we don’t see (I may never have told you that he has seizures in his brain that don’t show physically), I always think it must be very bright and noisy in his brain, so even if the diet can just turn down the volume in his brain just a little, that would be wonderful.

My husband said today that he hopes, along with reduced seizure activity, the new diet lets part of his brain develop and we finally get smiles from Samuel. Just the odd smile now and again would mean the world and more to us.

But while we are all full of hope, we do feel like celebrating too. Celebrating the fact we have been given this chance. Samuel has been given this chance. Who knows what will happen. While I’m trying to be cautiously optimistic (in case it doesn’t work), I’m also so excited!

Whatever happens, the Ketogenic Diet has given Samuel, has given us all a chance and I think that is most definitely worth celebrating.

For more information about the Ketogenic Diet, pop over to Samuel’s Ketogenic Diet diary and also visit  www.matthewsfriends.org

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Share your celebration post below and once you are done grab the Celebrate Blogging Challenge badge for your blog! Don’t forget to tweet about it too using #celebratebloghop

Click here to enter your link and view this Linky Tools list…

My previous ‘Celebrate’ blog hop posts:

Tricky Customer Celebrate Blog Hop

‘Celebrate’ blogging challenge

It’s a blog hop challenge!
I’ve taken the plunge and started my very own blogging challenge and it provides an opportunity for us to share and celebrate the good stuff.
This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children.
So please join me each week and post about what there is to celebrate in your world during the past week.
I’m looking forward to reading your posts and celebrating with you. You can read mine here where you can also find out about how to add a link to your celebration blog post.
To make sure that all the posts entered get as many views as possible, do try and link back to this post or duplicate the linky in your post and once you’ve done that make sure you tweet about it using #celebratebloghop . Don’t forget to grab the badge below and add it to your blog too!
Tricky Customer Celebrate Blog Hop
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Celebrate: The ultimate milestone

Under ‘normal’ circumstances (whatever that may be), in my 17 months career so far as a Mum, I’d have noted and celebrated Samuel’s milestones. When he said his first word and what it was, the first time he laughed, when he started to roll over, crawl, walk, when we started getting him onto solids and so on.

But these are milestones that we have never reached and may never do. But I think Samuel has reached milestones that beat all these.

Milestone 1 – Coming home from NICU. We were warned that it might never happen. We might never be able to take him home because we’d either lose him to his seizures or he’d be so heavily sedated, he’d have to stay in hospital indefinitely.

Milestone 2 – First birthday. Something we felt we could only dream of reaching. And we did and had a fantastic family birthday party.

Milestone 3 – Christmas. Samuel spent his first Christmas in hospital, but he spent his second at home with us and it was absolutely wonderful.

Milestone 4 – Our one year anniversary of being home from NICU.

Milestone 5 – Beating the genetics prognosis. Last April (2011), we were told that it was very likely that we would only have Samuel for months. His condition would deteriorate and finally beat him. Beat us. That was a year ago and look at him now. His neurologist has said herself how impressed she is with how well he is doing. Since we’ve been home from NICU we have only had one emergency admission. I think this is the ultimate milestone and Samuel has reached it with bells on.

My brave little solder. Still here, still fighting, still gorgeous.

Team Sam. x

This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Share your celebration post below and once you are done grab the Celebrate Blogging Challenge badge for your blog!

Click here to enter your link and view this Linky Tools list…