Tag Archives: Julia’s House

Message from Samuel

Hello

My name is Samuel and I need your help. I have a rare genetic condition which causes severe epilepsy and I have many seizures every day. I am severely disabled and despite being almost 2, I’m really just like a little baby. I regularly visit my friends at Julia’s House, Dorset’s Children’s Hospice, to give my Mum a bit of a break but also because I love having play time and cuddles with the lovely nurses and carers.

Mum says that they’ve changed our lives. I think my Mum was feeling a bit lonely and lost before, but since we joined the Julia’s House community we have been overwhelmed with all their kindness and support.

People think that a hospice is just where people go when they are very poorly and are at the end of their illness. But  that isn’t true. To me and my friends, Julia’s House is the best nursery in the world and we are so lucky to have them on our doorstep.

To thank the wonderful people at Julia’s House for all their love and kindness, my  Mum and Dad will be running the Hospice 5k in Bournemouth on 21 October. Mum and Dad aren’t very fit, so I think they are quite nervous, but they are determined to try to cross the finish line in one piece!
Why am I telling you all this? I’m hoping that you, your colleagues, friends and family can dig deep and help children like me and families like ours by sponsoring my Mum and Dad at: http://uk.virginmoneygiving.com/team/Team_Sam

However small your donation, it will go a long way to help Julia’s House continue to do their fantastic work.

Thank you. From the bottom of my heart.

Samuel xx

‘Normal’ for a day

Last weekend we went to our first Julia’s House family BBQ. We weren’t sure what to expect but we knew it would be a good experience for us.

Being honest, truly honest, at first it was a bit daunting. We had never seen so many wheelchairs or special buggies in one place at a time. There was a fantastic turn-out and the place was full of children with all manner of additional needs/medical problems/disabilities etc.

But that feeling literally only lasted a few minutes and as we looked around, we saw what seemed like every other family with a feed pump or some kind of equipment attached to their wheelchair. We smiled to each other and my husband said: ‘at last we are normal!’.

No one batted an eyelid at us. No one stared. No one wondered. No one stood looking awkwardly at Samuel wondering if perhaps something wasn’t quite right. No one patronised us, felt sorry for us, told us how brave we were or asked awkward questions. Everyone just got on enjoying themselves (and trying to keep track of the more mobile children!).

I’m starting to get to know more Mum’s from Julia’s House so of course it was wonderful to see them and have a good old natter about all the things that are part of our everyday life – gastrostomy buttons, therapists, seizures, ketogenic diet and so on.

It was also lovely to see the carers and nurses there too, who all took the time to come around and chat with the families and children. Quite often I’d look up to see one of Sam’s carers or nurses holding his hand and chatting to him.

There were fun activities for all the children and their siblings – bouncy castle, craft tent, music, a pet corner (I believe a snake was available for ‘cuddles’), play sessions with the Play Maker, face painting, BBQ, ice cream and to end the day there was an amazing (and brave) fire display.

This wasn’t a fundraising event for Julia’s House. They organise this every year for families to get together and just enjoy themselves and enjoy being part of a very special community. I think Samuel, his Dad and I fell in love with Julia’s House all over again that day.

James is the cousin of Sam’s Dad and is climbing Kilimanjaro to raise money for Julia’s House to help them continue all the wonderful things they do. If you’d like to support Julia’s House and what they do for children like Samuel and families like ours. You can sponsor James at: justgiving.com/James-Day1

To find out more about the wonderful work Julia’s House does watch this video.

God save our NHS

I talk a lot about Team Sam. Team Sam is headed up by, well Samuel of course, and consists of not only his Dad and I, but all the people who love and care for him – that includes Julia’s House who look after him and his therapists and doctors who oversee his care.

But I must say one massive component in Team Sam, I mean without it we wouldn’t be able to do what we do so easily, is our old faithful NHS.

Hopefully during our lives most of us will only have to rely on the NHS a few times and for only minor things. We, however, are so reliant on the NHS for everything. As a family our biggest financial cost of having Samuel was me having to give up work. When I was pregnant our intention was for me to go back part-time, whether that was for three or four days (we were still negotiating that right up until his arrival). But we soon realised that there was no option and I was to  give up work and be his carer.

But wow, Samuel must cost the NHS a pretty penny. Off the top of my head they pay for:

  • All his medicines (and don’t forget he has quite a few and I have been reliably informed by my local chemist that they aren’t cheap)
  • Ketogenic formula
  • Pump equipment and bits and bobs
  • Gastrostomy care and related bits and bobs
  • Syringes
  • Various therapies including hydrotherapy and physiotherapy
  • Special buggy
  • Special tumble form seat
  • Special high chair
  • EEGs (recording of electrical activity in the brain)
  • Stuff to test Samuel’s blood ketones and glucose – monitor, lancers and the test strips (one box of 10 ketone strips costs £30 & we use two a day)
  • Paedetrician, Neurologist, Genetics, Child Development, Community Nurse, Speech and Language Therapist, Dietician
  • Treatment and care when admitted as an inpatient (although Samuel has only been admitted once as an emergency patient since coming out of NICU)

I know I’ve forgotten a number of things but I think you get the idea. Anyway, the fantastic NHS pays for all of that. Its all free. We don’t have to have special medical or health insurance. We just get it all because we live in England. I love the NHS. The NHS has helped our little lad defy the odds.

One of Samuel’s best friends Liam lives in America. They don’t have the NHS like us and his Mum and Dad have to worry about medical and health insurance. I think they may not even be covered for Liam starting the Ketogenic Diet which we can’t even imagine happening here. I must admit that I do feel guilty about how lucky we are and it makes me feel all the more grateful.

So to you NHS here is a massive thank you from Samuel, our family and also all the families in this country who benefit like we do.

And so a message to Mr Cameron. The NHS is vital for children like Samuel and without our free medical care, I can’t even imagine what we’d do and the effect it would have on Samuel. Would it mean that we’d have to make certain choices as to which therapies, or worse, which medicines he could have because we, or our insurance company, would be paying and couldn’t afford (or wouldn’t pay out) for certain things? Would we have to look at cheaper alternatives for some of Samuel’s care and treatment? Hands off our NHS Mr Cameron, I’m warning you.

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:

 Tricky Customer Celebrate Blog Hop

Play time

As you may imagine, playing with Samuel is different to playing with other children. All the toys he has have a purpose. They light up or sound or have a certain texture. The techniques we use to play with Sam are of course different too. Play is deliberate and very important for his development.

At Julia’s House, Samuel’s hospice, there is a lady called Sue who is the play therapist. She works with all the children and whatever their disability and condition, she devises a special individual play plan for each child.

Now before I go on I’m a bit of a fan of Sue’s. Not only is she fantastic at what she does and wonderful with Samuel, she’s great to chat to and just seems so in tune with everything and she just makes you believe that anything is possible.

Thanks to Sue we’ve already had a mini break through with Sam which I noted in ‘star of the week‘ and she’s really encouraged us and inspired us with different play techniques.

Sue, the play therapist,very kindly gave us this toy which plays the ‘Twinkle Twinkle’ tune.

This week Sue gave me song which she had written for Samuel to be sung to the tune of Twinkle Twinkle Little Star. Samuel’s Dad will of course change it to Daddy when he sings:

Samuel, Samuel I love you,

Yes, oh yes, oh yes I do.

I’m your Mummy, I love you,

Yes, oh yes, oh yes I do.

Samuel, Samuel, I love you,

Yes, oh yes, oh yes I do.

Sue has suggested that whenever I sing it to Samuel I should lay on the floor with him, or cuddled up to him on the sofa. As we go on, we will use hand bells to make a sound every time we sing Samuel’s name to reinforce that this song is for him.

I will let you know how we get on. I may even post a video sometime of us playing and singing the song. Maybe.

Julia’s House

As regular readers will know, Samuel now goes regularly to Julia’s House, our local chidlren’s hospice. I can’t tell you how wonderful the place is, it really is a special place, a happy place. It’s important for me that you understand what Julia’s House is about. It isn’t just about children who are near the end, it’s for children who just need extra help and care.

This is a film you will find on the Julia’s House website. Please take a moment and watch it:

For more information about Julia’s House please visit www.juliashouse.org

Star of the week

Today, for five times in a row, my gorgeous son looked at an object for three whole seconds. The Julia’s House Playmaker and Sam’s carer saw him do it too. I’m one very proud mum.

Running for Sam and friends

My dear twitter friend @mrsaimeehorton is running the Lincoln 10k for Sam’s friends Julia’s House. Julia’s House provides respite care and support to children with life-limiting and life-threatening conditions and their families through a dedicated team of community carers, nurses and other professionals working within the families own homes or at Julia’s House.

Samuel visits Julia’s House regularly where they not only provide excellent care, but they provide fantastic play sessions, but also things like arts and crafts in a really lovely homely enviornment. It really is a happy place. For me, they provide amazing support, respite opportunities and through them I’ve already met some other mums who have been a great source of support and information.

I know that we are regularly asked to donate to worthy causes, but if you have been reading this blog for a while, I hope you will have come to know what an amazing boy Samuel is and just what Julia’s House means to us.

Please Sponsor Aimee here

And to my dear friend Aimee, thank you from the bottom of our hearts. x

Early days

Well we’ve had four sessions now at Julia’s House and I do really feel that bringing them into our lives is certainly going to be really positive for us.

For three of those days Samuel slept for most of the day (which he is doing now as I write) so the carers didn’t really have a chance to play with him. One of the sessions he was much more awake, but very unsettled with some bigish seizures thrown in, so we didn’t think he was in the right mood for play time.

But I do think they are getting to know him. The only problem is (and I need to keep reminding myself that it is still early days) that to be able to leave him with them, they need to see and understand which of his seizures we medicate and which we just cuddle him through.

There is a protocol, which is a good protocol, but when it comes down to it, it isn’t helpful for a child like Sam who has a lot of seizures. So the protocol says to medicate when he’s been having a seizure for 10 minutes. The problem is, Samuel has a lot of seizures. When he’s twitching, that is actually a seizure. So there are some things he does that we don’t medicate, that we just have to overlook.

There are some seizures, even though he’d been doing it for several minutes, where I would just scoop him up onto the sofa with me and we’d cuddle for however long he needed. It wasn’t a seizure that particularly would worry me and in fact in our language at home we’d probably say that he was unsettled and having a bit of a fuss.

Apart from leaving him with Auntie C a few times for no longer than a couple of hours, I’ve never left Samuel since he came home from hospital. It has always been his dad or I with him (mainly me). I’ve never had to explain it before in quite such detail. This is different to when I’m discussing Sam’s condition and seizures to his doctors. This is so I can leave him confident that his new carers understand when to get the Midazolam out and when just to give him a good squeeze.

Because Julia’s House are booked up with training over the next couple of weeks, we’ve not got a session again until next month. But I’ve got a plan. With the use of our little video camera, I’m going to film Samuel to show what we do medicate and what we just cuddle through. I think this might help me show the nurses and carers because I have found it really quite difficult to explain and worry that I’ll just never be able to articulate it correctly. But I keep reminding myself, it’s still early days.

They are more than happy for me to stay with Samuel when he has his sessions and I can go off into another room and have a read or a coffee if I want some space. But I like being around the carers and seeing the other children play (I could write a whole post about how adorable the other children are) and watching people chat to Samuel and admire his gorgeousness.

They make me feel normal.

It is so nice to be around people who will chat and cuddle Samuel and aren’t put off by him not obviously reacting to them. They stroke his hand and chat to him about what the weather is like, what the other children are doing, they tell him that they like his shoes and his new jumper. They hold him tightly when he has a seizure and tell him that it will be alright, he will be ok. Very quickly they have become Samuel’s friends.

I know we’ll get there in time. After all, it’s still early days.

 

Related posts:

The guy in the sky

I don’t consider myself to be a particularly religious person. I did go to Catholic schools when I was younger, but my parents (especially my Dad) did leave it open to us to decide what we believed in.

I do believe in God. I can’t help it, it’s a feeling in my gut that I can’t control. I must believe in God because I get angry at Him (in my view God is more likely to be female being a creator and all that but for ease in this instance I will refer to him as male), I pray to Him – there have been times I’ve been desperate over Samuel’s condition where I have literally got down on my hands and knees and prayed. That must mean I believe.

You look at children like Samuel and those that go to Julia’s House and you wonder how nature, how God can be so cruel. How on earth can this be allowed to happen. But then you look at Samuel’s gorgeous eyes, the pleasure he gives us, the love we have for him, the goodness he brings out in people and wonder whether there is a reason for this. I am angry with God. But at the same time I’m so grateful to have Samuel and thankful that he’s my boy.

I don’t think it does any harm to believe in something like God. What if I’m wrong, what’s the worst that can happen? I mean if there isn’t anything then I’m not going to know that am I after I’ve popped my clogs?!

I don’t go to church regularly at all. I don’t feel connected to God in church. For me, my church is my home. My home is full of love, joy and laughter. People come over to see how we are and to see Samuel and for his cuddles. That’s my kind of church. Perhaps it is being a Catholic and the sedateness of Catholic Mass, sitting amongst strangers. When I do go I often look around and wonder whether the regular church goers, the ones that come to church religiously (excuse the pun) are actually good, gold hearted people. Just going to church every week doesn’t make you a good person. I’m probably surrounded by Christeningpeople who have their prejudices, who judge people who may live their lives differently.

When Sam came home from NICU we got him Christened. Not in case we lost him, but to give him all his chances. To make sure everyone was in his team. I’ve been a union member all my working life and like to cover all corners, just in case. We’d got to know the Chaplin in hospital, he’d pop over to NICU for a chat and to see Sam. He kindly agreed to Christen Samuel in our own home. So yes, I suppose my home really is like a church.

I think I need to believe in God because I need Heaven. My boy will have a much shorter life than he should. I need to know that the end, isn’t really the end. I like to think that when my time comes and I walk up to the pearly gates, there will be my boy waiting for me and I’ll be with him again.

My mum doesn’t go to church very regularly either, but she’s very spiritual. When we realised about Sam’s condition she looked up various Saints to pray to and keeps a photo of him by her bed with her rosary. My mum always says that because Samuel is so pure, so innocent he is like a Saint. She wrote to the nuns that taught her at her boarding school and they promised that they would pray for him. So my boy even has a group of nuns on his team!

When I pray to God for Samuel, I don’t ask him for a miracle, although I’m assuming He Sam and his mumknows that I wouldn’t mind if he did see it appropriate to perform one! To replace Sam’s missing Corpus Callosum. To stop the seizures, to let Sam start to reach development milestones, I would give anything and everything for a miracle like that. But all I ask is that Samuel is content and comfortable in his little world. We judge happiness on big smiles and laughter, but I think in his own little way, Samuel is a happy boy. And that is all we want.

New chapter

You know the advert where the family have booked a package, all-inclusive foreign holiday and throughout their journey right up to and including arriving at the hotel they are treated like VIPs?

Well I had that feeling today. That lovely fuzzy feeling where everyone is so very pleased you are there and they’ve been really looking forward to meet you.

But we weren’t on holiday, we were at Julia’s House. It was our very first session there this morning and it was wonderful. When we came in all the carers and nurses appeared and said hello and were keen to meet Samuel (and I). I kept hearing, ‘Oh is this the lovely Samuel, can I give him a cuddle?’. The whole morning session was spent with him being cuddled by different people who were all just so lovely.

The place does not at all feel like a hospice. It is very warm and homely and the bedrooms are really cute and cosy. We were given a quick tour and then I was made a lovely cup of tea and sat down with a lady called Pam who will be one of Sam’s carers and we just had a lovely chat about Samuel and our world. I think most if not all of what I said she had heard before which I found very comforting. We also met Ashley who will be another one of Sam’s carers, he was very sweet with him and didn’t seem to mind when Sam farted and burped on him which I thought was a good sign!

There were a couple of other children there (who were very sweet) whose parents weren’t there and I was interested to watch the nurses and carers play and interact with them. They were really kind and made a huge effort to make things fun and interesting.

Even very limited children like Samuel get involved with arts, crafts, baking (!), gardening and all sorts. I’ve been warned that my fridge will soon be covered in pictures made by Samuel. There is a fantastic play lady too who gets really involved and puts together an individual play plan for the child, I just hope that Sam doesn’t sleep through his play dates with her!

It was so nice to see them enjoy Samuel and take pleasure in cuddles with him (his cuddles are fantastic I must say). The lead nurse even said about how cuddles were part of his emergency care plan which she’s not come across before, but thought was fantastic.

I was only there for about three and a half hours but I could hear a little voice in my head say ‘Yes I trust these people, I really do.’

My only reason why I feel that it may take a few sessions before I’m happy to leave him there on his own is because I want to feel that they do completely understand his seizures (as much as anyone can understand his seizures!) and I’m confident that they know when to medicate and when just to cuddle him.

But I can’t explain the feeling I had in my chest as we left.

For quite a while I’ve very much wanted to be part of the Julia’s House community, to meet other parents like us, to be part of a world where we are normal. A world where there isn’t anything we say, or anything that Samuel does that is particularly surprising or unusual. Just normal. Our normal.

But above all, the most important, significant feeling I have is that they will really help us get the best out of Samuel and will definitely be a big part of our world.

This is the start of an exciting new chapter in the adventures of Samuel Luke.

Respite to the rescue (part 2)

So the lovely people from the hospice came over for our assessment and to properly meet Sam. As usual there was a million forms to complete, but I’m use to all that and to have to answer a whole lot of questions. I did find it difficult when they would ask whether Samuel likes this or that as it’s hard to tell. We know he likes being held and cuddles. We just accept that he tolerates other stuff – which basically means he doesn’t get upset or the item/activity in question doesn’t start off a seizure!

Anyway, we have our first play session at the hospice this week and I’m really looking forward to it. They said that I’m welcome to stay for the sessions (alot of parents do just to see what happens and how the child responds) or maybe go off somewhere for a coffee. It could be a good opportunity for a break.

They do arts and crafts and even baking with the children and when I enquired as to whether they still do all this with chilren who are very limited like Samuel, the nurses said that they most definately do and I’d have to get use to him coming home with lots of paintings and so on.

There is also a dedicated play lady who devises a special plan for the individual child and she has had some really good results. I actually had a look on their website last night and this lady was mentioned and she sounds marvellous.

The ladies seemed to really understand me, but then I expect they’ve heard my exact same story many times before. They realise that I’m keen to meet other parents so have said that they will put me in touch with some of them and apparantly the parents often arrange trips out and get togethers amongst themselves.

We of course talked about respite in the home. A carer coming here to look after Samuel. If I’m home (apparantly some parents choose to still be at home when carer is over but uses opportunity to have a bath, a snooze or do other things or they just enjoy the company of another adult around) then they will only send one carer but because of Sam’s level of needs if I’m not home then they will send two carers. I still feel a bit strange about having respite in the home, not sure why, but I think that if I start by being involved with the hospice and leaving Sam there, then I’ll get use to the idea of them looking after him at home.

I’ve also decided to stop referring to it as the hospice. I don’t like that phrase. Instead I will refer to them by their name, Julia’s House. I think that is much nicer.

I think becoming involved with Julia’s House could be a real turning point for both Samuel and me. For me it not only gives me the opportunity for a break but also the chance to meet other parents like me and a chance for me to feel normal. For Samuel, well he’s going to have a load of new people to cuddle and adore him. He’ll have more people to help him and bring out the best in him.

I just can’t wait.