Uncle Midaz

Midazolam has been in our lives since the early days. It has become a very important part of our armoury in the battle against Samuel’s seizures. It is his emergency drug.

The protocol of when to give Midazolam to Samuel is if he’s had a seizure lasting more than 10 minutes or if he’s had a cluster of four or five short ones in half an hour. It is only given for full on focal seizures and not his general twitching.

In the very early days, Samuel had Midazolam a lot. On average he’d have about five doses A DAY! There wasn’t really a clear protocol at that time so he was given it almost as soon as he’d seizure. Problem was, Samuel would seizure a lot and medical staff are trained to zap seizure activity immediately! But the neurologist stepped in and changed the rules. She made us and his hospital team wait. It was hard. I’d be there holding my boy who’d been having a seizure for 8 long minutes and I wasn’t giving him anything. But it worked. It showed us all that more often that not, Samuel will self resolve after about 10 minutes and then be fine.

When the going is good and things are quite balanced, Samuel on average has Midazolam about once every two weeks. Although when the Ketogenic Diet was at it’s best he went without it for about 60 days!

Midazolam is the only thing Samuel has orally. It is squirted into his cheek and absorbed that way. After Samuel has been given it, he can take a bit of time to wind down. Sometimes he will even have another seizure after he’s had it. But then he eventually calms down and relaxes and usually goes off to sleep for about three hours.

Giving Midazolam is at last much easier after the introduction of pre-filled syringes. Before, Midazolam came in a little brown bottle and you would have to push the syringe through the stopper to draw up the Midazolam. This wasn’t always as simple as it sounds. There was always a big label over the bottle making it awkward to see what you were doing, if you’d already used the bottle a couple of times and the liquid was getting low, you’d have to angle the bottle a certain way to ensure you got enough in your syringe. Then you have the problem of air bubbles. When drawing up a medicine, you have to get rid of air bubbles as where air bubbles are, medicine isn’t. Don’t forget this is an emergency medicine. You are trying to do all this as quickly as possible too!

20121216-102738.jpgSo at last we have pre-filled syringes. All you do is remove the seal of the tube, take out the syringe, break off the tab and it’s all ready to give.

We have a bit of a love & hate relationship with Midazolam. We love the effect it has. How it works. How it stops what is happening. But we hate it too. We hate having to give it. We hate what it symbolises…that Samuel’s had a bad patch.

But the relief you feel when you’ve been watching Samuel seizure for over 10 minutes and then suddenly he stops, relaxes and yawns and goes off to sleep. All is calm. Samuel is safe and content once more. That is why Uncle Midaz is a very important part of Team Sam.

‘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.

Your friend Samuel

Samuel is a bit different to your other friends. In our heads we have brains which are very clever, like computers, which help us to do all the amazing things we can do like walking, talking, eating and playing. But Samuel’s brain is missing a piece. If you think of our brains as a jigsaw puzzle, Samuel’s is missing a puzzle piece and because of this there are a few things that he cannot do.

Samuel doesn’t chat or play like you or I. If you go up to him and say hello, he wont say hello back, smile at you or look at your toys. He’s not being rude, it’s just simple things like that are very difficult for him. Samuel cannot walk, but he can still go out and about by being pushed around in his special buggy.

If you met Samuel you might notice that he doesn’t eat food like you or I. He doesn’t drink or eat with his mouth. Samuel’s food looks a bit like a milkshake and he has it through a special button on his tummy. Samuel’s Mummy and Daddy attach a little tube to the button and the milkshake goes through the tube into his tummy. The button doesn’t hurt and all Samuel can feel is the nice milkshake filling up his tummy.

Samuel often visits his friends at Julia’s House. Julia’s House is a bit like a special nursery for children that might be poorly or need some extra special help. When he is there he spends a lot of time being cuddled by some of the grown ups who look after him. Playing with Samuel is a bit different too, the grown ups might ring some noisy bells for him to listen to or they might show him some nice pictures. At Julia’s House the children do arts and crafts, baking or if the weather is nice they might use the swing in the garden. There are always lots of fun things to do. Samuel has even helped to make cookies and make his Mummy a Mothers Day card.

Samuel is sometimes a little bit poorly. You might notice him making funny jerky movements or his legs and arms go in funny positions, but don’t worry, he’s ok. Sometimes his Mummy and Daddy give him medicines which make him feel much better.

Samuel can’t play or chat to you like other children. But he can still be your friend. Just hold his hand and chat to him or show him how your toys work. If he doesn’t look at you, don’t worry because he probably is listening and he does like to hear noises and people talking.

Samuel is a bit different to your other friends, but he can still be your friend.

Dear Daddy

I can’t tell you that I love you. But I do. I can’t show you that I think you are an amazing Daddy. But you are.

When I was born you were the first person to hold me and to cuddle me. You were the first person to talk to me. You introduced me to Mummy and from then on we were a team.

For all my eight weeks in NICU you came in all day, every day with Mummy and sat by my incubator/cot looking at me, stroking me, cuddling me. When it was time to do a nappy you were always keen to do it (I don’t think Mummy was as enthusiastic as you), anything to help me. You would always be asking the doctors questions, you were always fighting for me. You’d do anything that needed to be done. You were my voice. My spokesperson. You’d question what needed to be questioned and were never afraid to step in, change the plan or just say no. And you still do this for me, even now.

You and Mummy always say that Topiramate and Dr W got me home. But I think it was you. You never lost sight of wanting me to come home and I think you passed on some of your fight to me.

Mummy talks to me a lot about you when you are at work and we both always really look forward to when you come home. I love that when you come in the door, often before you’ve even taken your coat off, you come over to me and give me a kiss and cuddle.

Mummy always says how lucky she is that you are so wonderful and always ready and willing to share the Samuel-jobs. You share everything and help with everything. It must be such a relief to Mummy when you are home for the school holidays – I love it because I get so many more Daddy-cuddles!

Everyone knows how much I like cuddles, but the best cuddles come from you. When you hold me in your arms I feel so warm and safe. So content. I love it when you sing to me and the way you make up funny nicknames for me.

Mummy might be my nurse and main carer, but you are what helps her do such a good job. You give her the strength and confidence to do what she does. Mummy thinks this might sound cheesy but you are her rock.

You are my hero. My champion. My buddy. My friend. My everything. And I love you very, very much.

With lots of love, Samuel xxx


This is my second attempt at writing this blog post. I found what I was going to say too hard to write. It was about a dream I’d had. The dream was about Samuel. A fine and healthy Samuel. No ARX. No epilepsy. Just a fine and healthy 19 month old boy doing normal 19 month old things. That first post was going to tell you in detail about the dream. That I went into his room in the morning and there he was smiling at me, asking to be picked up. I watched him eat and enjoy his breakfast, even ask for me. We went to the park and played on the swings. He said Mummy.

It was one of those blog posts that squeezes your heart with every word. But what was the point of me repeating to myself every single acute detail of that dream? It wasn’t true. It wasn’t real. I will never wake up and find this rollercoaster has been a dream. This is real.

But it made me think about what I wouldn’t have if it was a dream.

  • We wouldn’t have the bond we have with Auntie C.
  • I’d be back at work. I wouldn’t get to see my precious boy every single day.
  • I wouldn’t have the friendship I do with the amazing mums I met in NICU.
  • I wouldn’t know Julia’s House and just what a fantastic place it is. I wouldn’t appreciate just how full of love it is and I wouldn’t have met all the lovely carers and nurses.
  • However much I would have loved Samuel, I probably wouldn’t have appreciated him the way I do. I may not have realised just how precious life is and how vulnerable it is.
  • Samuel has brought out peoples true colours. Although they’ve always been wonderful, my existing friendships, particularly with Sam’s Godmother T, wouldn’t be as they are now. I’ve leant on T. I’ve needed her and she’s delivered. With bells on.
  • I wouldn’t have made the lovely friendships I’ve got with other local mums of children with disabilities, who are extraordianary strong and just simply brilliant women.
  • I wouldn’t be person I am now. Samuel has brought out the best in me. I am patient. I am kind. I am compassionate. I can see beyond the condition, the disability, the tubes, machines and scars and see the person that is there.
  • If I hadn’t found myself in this new world, I may never have opened my twitter account. I may never have started a blog. You wouldn’t know me and Samuel and I wouldn’t know all the absolutely amazing people who I’ve met through twitter and blogs.

Don’t get me wrong, of course I’m not denying that I would not exchange everything I own, every limb of mine, for a miracle. But that isn’t going to happen. So why dwell on the what could have been as it will never be? Just enjoy the here and now and realise how lucky we all are.

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

Tricky Customer Celebrate Blog Hop

My previous ‘Celebrate’ blog hop posts:

Our nest

I love our home. We’ve lived here for five years now and after a dodgy couple of years of living next door to the neighbours from hell (which saw us having to appear in Magistrate Court to act as witness for their landlord who was desperately trying to evict them), we’ve really fallen in love with our little nest.

We also live two doors down from our Guardian Angel Auntie C.

Our house is a small three-bedroom end of terrace. We have a sweet little garden that we are desperately trying to make into something that we can really enjoy and take Samuel out into for picnics, swishing about in the paddling pool, cuddles and sensory play. I also need to figure out how we can squeeze in one of those fabulous basket nest swings.

Although it has been a lovely home I’ve started to think about the future. For a long time I’ve avoided thinking of the future – there was a time that we didn’t think we’d get Sam home from NICU. What about his first birthday? Second Christmas? But he made it. So I’m starting to allow myself to think that maybe we will be blessed for quite a while, despite his prognosis.

Samuel is getting a big boy now. A big and long boy. I can still carry him up and down the stairs but I must admit it’s a relief when I put him down – I’m not the strongest chick on the block and it is quite awkward as he cannot support his head or neck and when you carry him, he doesn’t cooperate or hold on. Our staircase is quite narrow and it’s tricky when he has a seizure while we are going up or down the stairs.

He is only 19 months (yes world, my boy has reached 19 months!) but I’ve started to think about whether we need to make some changes to the house to make everything easier and safer for us all, but especially Samuel. Being an end of terrace, I’ve been wondering about whether we can extend out the side. My dream would be to have a double-decker extension but have a feeling that may be hugely out of our budget! But I would love to make his room into an amazing sensory room.

I want to make our house beautiful. I want it to feel like a perfect family home for all of us. We have started to talk more about extending our family and are seriously looking at the possibility at our options for having more. So it would be amazing for us to make our home into something amazing for other children who join our family.

We’ll get there. Somehow. But for all the space or beautiful design this house may lack, it’s full to the brim of love.

(If there are any genies reading this and in the mood to grant some wishes, we could really do with a new kitchen too! x)

United front

Samuel’s Dad and I are often told that we are very brave and strong with how we deal with Samuel and his condition. We aren’t really. We are just like any other parents. If you are a parent reading this, wouldn’t you do everything for your child? Wouldn’t you fight tooth and nail for them? Just because you don’t see me in tears, doesn’t mean I don’t, we don’t, have dark moments.

But together, as a couple, as Samuel’s parents, we are very strong. We have been together a long time, for about thirteen years actually. We met at university in my first year (we were flatmates) and that was that. We’ve always spent an enormous amount of time together. At the risk of sounding cheesy, we like each others company, we know each other so well it’s just so easy to be together. In some ways we are really quite alike, but then our differences make it work too.

I think I find our ‘situation’ easer to deal with than Sam’s Dad because it is my life 24/7. Whereas he has a busy, demanding job, Samuel is my job. My whole day (and night) is about him. I go to every appointment, meet every specialist and have to discuss Samuel’s condition weekly, sometimes daily. Very early on I got use to explaining ARX to people. I got use to having to tell people that Samuel has global development delay and is just like a very little baby. I also got use to being around fine and healthy children. ‘Normal’ children. Most of my friends have children now. Being at home all the time, I see them quite a lot and spend a lot of time playing with and admiring their little ones. There are times when it kicks me in the gut, you know, that feeling that Samuel will never do some of the basic things they can do. When they say ‘Mummy’ and ‘Daddy’. When they smile and giggle. But I’m ok with it. I accepted it a long time ago. I had to. But Samuel’s Dad doesn’t see our friends children as much, so he still has those moments. He still has that feeling of being kicked in the gut. But I think it’s getting a lot easier for him.

But we are a good team. We have formed our funny little bubble around Samuel and it’s very cosy. If you were a fly on the wall here you’d probably laugh at us. When we listen to music we often change the words to the song to make it about Samuel. We have a wide collection of what you may think are very obscure nicknames for him. We are just crazy for our boy.

I don’t think we could do what we do if our relationship isn’t how it is. Don’t get me wrong, we squabble, we annoy each other, we aren’t perfect. But we never really fall out. We make each other laugh. We hold each other when we cry. We would even give each other our last Rolo (well I might let him have a lick of it!).

Julia’s House article: Samuel

Article written by Sally Rowe and published in the Julia’s House newletter and online at juliashouse.org

Meet the children: Samuel

“You know that holiday advert on TV where the family are made to feel like VIPs – well that’s how I feel when I take Samuel to Julia’s House.”

Zoë and her son are new to Julia’s House and her enthusiasm for it bubbles over: “I love it, love it love it! It feels so good, it IS like being on holiday.”

This ‘mini break’ Julia’s House-style means a breather from the endless slog of caring for a really poorly little boy, but more than that, the chance to be among people who just know how hard it is to find that elusive normality when your world has been tipped upside down.
Samuel has a rare genetic condition which has affected the development and formation of his brain. “It is smooth where it should be ridged and he is missing his corpus callosum, which links the two sides of his brain.”

The physical and – to outsiders – disturbing side effect of which is Samuel’s extreme seizures.

Snuggled in the crook of his mum’s arm, he looks very content. But this peaceful scene is shattered, with alarming regularity, by fits – some barely registering on the richter scale of epilepsy: a slight twitching of the eye, a flick of the head. Others go on and on, to the point where they need monitoring or he needs to be given his emergency medication.

“Samuel, come on, do I need to start counting?” Zoë talks gently, yet firmly, when, as if on cue, his body stiffens as it is wracked by stronger spasms. “Sometimes he has very good days, sometimes very bad days and everything in between.”

There is little Zoë can do apart from hugging Samuel just that bit closer as he rides out this horrible internal storm.

“The Julia’s House staff couldn’t believe it when they saw that his care plan actually includes hugging,” she laughs, “it’s true, cuddling is actually part of his protocol!

“It makes him feel safe, and also, it helps me judge his fits better when I’m holding him. The doctor’s call it ‘containment’ – I call it cuddling!”
Samuel is utterly irresistible. With his soft golden curls, big blue eyes and long, long curly eyelashes, he is really handsome boy and as such, attracts a lot of attention when out with Zoë and her husband, Chris.
“People think he’s just a very big baby, but that’s because developmentally he is, but he’s actually 17 months old.

“They say things like, ‘enjoy him now, you just wait ’til he starts toddling and getting into everything’. It’s hard to explain that this isn’t going to happen, so it’s best just to say nothing.”

“We can feel normal when we go there. The staff have seen it all before. They are so wonderful, so welcoming, so lovely. Nothing fazes them.

Harder still, though, is when people do know the situation, but find it difficult, or embarrassing to put their feelings into words.

“People sometimes say to me ‘I’m so sorry to hear about your baby’.
Zoë is indignant: “It sounds so terrible – he’s not dead!

“We don’t feel sorry. We feel thankful. Some people can’t have children at all, but we’ve got Samuel. He brings so much joy, he has really brightened our lives.

“That doesn’t mean to say he doesn’t break our hearts now and again, but we love him to bits.”

Zoë is very animated when it comes to people’s attitudes towards Samuel. “We wish he wasn’t ill, but we don’t wish we didn’t have him.”

Samuel is all the more precious because he could well be the only child the couple ever have. For in the course of all the post-natal tests to determine the cause of his seizures it was discovered that Zoë , in some cruel chromosomal version of Russian roulette, had passed on rare gene mutation to her son.

His condition – ARX or Aristaless Related Homeobox – is passed on mother to son.

It’s so rare, that apart from the outward signs apparent in his epilepsy, no-one really knows for sure what is going on in his head.

“It was devastating to think that I was responsible for Samuel being so poorly. The doctor’s say he could be having fits all the time in his brain that we are unaware of, which really upsets me.”

A pregnancy scan had revealed that Samuel had swollen ventricles and excess fluid on the brain. Doctor’s started talking about learning difficulties.

Samuel spent lots of time in neonatal intensive care where they were given a lot of support “by the NICU angels”. But while there, the couple were told to prepare themselves for the worst. “They basically said: ‘be prepared for the possibility that you may never be able to take him home.”

Yet despite the fact he has little more development than that of a six-week-old baby – he can’t hold his own head up, for instance – it’s not thought that his condition is deteriorating.

Zoë knows that as he gets bigger, it won’t just be his beautiful looks that draw attention and she is braced for more questions, more inquiring stares.

Which is why there is much comfort in finding a place where Samuel can be accepted, welcomed, enjoyed for what he is, not judged for what he isn’t.

Zoë believes she has found that in Julia’s House.

“We can feel normal when we go there. The staff have seen it all before. They are so wonderful, so welcoming, so lovely. Nothing fazes them.
“I was daunted about my first visit, but the reaction of all the carers was fantastic. They were genuinely excited by a new child arriving. They got down on Samuel’s level and spoke to him.

“They were even vying with each other over whose turn it was to give Samuel a cuddle and when he had a seizure it didn’t scare them. They took it all in their stride.

“And all the time, those little gentle touches to reassure Samuel. Tiny gestures that only a mother would notice.”
“When I walked out of there I felt like a proud mother – and that means the world.”

To find out more about Julia’s House and the amazing work they do for children like Samuel and families like ours, visit www.juliashouse.org where you can also make a donation.

Angel in trainers

I’ve mentioned before about my cyber friends and how they have become increasingly important to me. I am lucky enough to have a group of online friends who fall over themselves to be there for me, to be as supportive as they can, even if they live the other side of the country, the other side of the world.

Not all of them are parents of children with special needs, but I still find great comfort and support in them nonetheless. But recently one online friend has really astounded me. I have never had the privledge of meeting Aimee, although I would like to so very much. We’ve never met, she’s never cuddled Samuel but for him she ran 10k.

Aimee's medal

This weekend Aimee ran the Lincoln 10k because, well she must be a bit bonkers and tremendously fit, but because she wanted to do it for Sam. Aimee wanted to do something to directly help Sam, so she raised money for his hospice Julia’s House which he visits each week but also has carers come out to our home regularly, to provide care and play with him here to give me a break (and for them to have Sam cuddles without other distractions!). I’ve sat in on a handful of sessions at the hospice and been lucky enough to meet some of the other amazing children who go there. Each and every one of them has their own cruel and painful battle to fight every single day and Julia’s House brings them so much pleasure and fun, it’s lovely to see first hand.

At the time I’m writing this post, Aimee has raised an amazing £270. Some of this money we’ve donated along with Sam’s Grandparents, but the large majority came from Aimee‘s friends and people that are part of our online community. People Samuel and I haven’t met and unfortunately may never do. If you are reading this and are one of the generous people who have kindly donated, thank you, thank you all so very much.

And to Aimee,  I can’t put it into words how we feel about what you have done. But all I can say is that we thank you Aimee from the bottom of our hearts.

You can still donate at Aimee’s Just Giving page

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.

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:

Team Sam (#teamsam)

While we were in NICU I began to realise that we would have a lot of new people in our lives as time went on. And we definitely do. Team Sam seems to be rapidly growing.

But I don’t mean our close friends or family who have been fantastic. The grandparents, my sister, our dear friends Auntie C and Auntie T (Sam’s Godmothers), the other NICU mums who I’ve grown very close to, my former workmate K who is very dear to me, they are all great.

I also have great support from my online friends such as: @pressuresupport, @kjo6, @MyLittleHam, @Limmster, @mrsaimeehorton, @rachellwilliams, @innocentcharmer, @racheljeffares, @hayley_pelham16, @motherventing, @jordanfleet, @katekit01, @MrsCMonkey, @vickytervit, @h0pefulmummy, @jowonderwoman to name just a few.

But I’m talking about Team Sam: The Professionals.

Those who have been involved along the way since Samuel arrived include:

  • NICU nurses and doctors
  • Speech & Language Therapist (don’t be confused, she covers things like swallow etc)
  • Dietician
  • Community Nurses (we don’t see them that often though now)
  • Health Visitor (She occasionally pops over for a chat and a cuddle with Sam)
  • Physiotherapist and Occupational Therapist
  • Neurologist
  • Paeditirician
  • Genetics doctor
  • Child Development doctor
  • Surgeon (who preformed Sam’s gastrostomy operation and reviews testes situation)
  • Audiologist (for Sam’s hearing)
  • Play Development Worker from Portage (Early Years service)
  • Carers and nurses at Julia’s House
  • Play Maker from Julia’s House
  • Consultant in ophthalmology (for Sam’s eyesight)

To some people this may seem a very long list, to others a drop in the ocean, but they are all part of our team. Although they may occasionally frustrate me, they are all in Samuel’s corner, working so very hard for him.

Oh and I must not forget the big man, the guy in the sky, who, if he is around as I hope, he’s here on Sam’s team with the rest of us.

Thank you to everyone on Team Sam. I think all of us together makes one formidable team!

Team Sam! #teamsam