New wheels

In December we took ownership of a new van. I say ‘we’, it’s actually Samuel’s van. As he’s such a big boy now and having to dismantle his chair to put in the boot, then take it out put together, then lift him out his car seat and strap him in his chair, was becoming increasingly difficult and awkward and with the prospect of Samuel having a new little brother on the horizon, we decided a wheelchair accessible vehicle was the answer.

So we now have a VW Caddy Maxi Life. And we love it. We wheel Samuel into the back in his (Stingray) chair and then hook his chair up and then when we are at our destination, we just pull down the ramp and unhook his chair and wheel him out. It is so much better! We can fit the frame for Toby’s pram alongside Samuel’s chair in the back and the boys’ bits and bobs.

I was really quite nervous about driving (and parking) it to start with, but I’m so use to it now I can’t imagine driving anything else.

The only problem we (or I) have is that it doesn’t have a name. ALL our cars have had names (my old car was called ‘Fiona’ and Sam’s Dad’s car is called ‘Gary’) but not sure yet what to call this, so far we just refer to it as ‘the van’. So suggestions welcomed!



Samuel’s Pad

bedroomIn January this year, work started on converting our garage into a new bedroom and wetroom for Samuel. As you can imagine, carrying Samuel up and down the stairs was becoming increasingly difficult and unsafe. He’s a big boy now, plus when he is very twitchy or having a seizure, the steep stairs is a dangerous place to be carrying him.

The timing of the start of the building work wasn’t ideal. I came home from hospital with the baby on the Saturday and work began on the following Monday. But it was well worth it! His new bedroom has been wonderful. We no longer have to try to carry him up and down the stairs, he has a wetroom (which has a shower area, sink and toilet) where we can shower him in his shower chair. Plus we have overnight care now and it’s been great for that too.

It’s made such a positive change to us all, we are still so delighted with it. It’s a very small bedroom of course but it has everything he needs.


School boy Sam

A few weeks before Christmas last year, Samuel started school. Yes, my boy is a school boy now!

As you might expect it’s a specialist school which offers Samuel fantastic medical support but in a school environment where he takes part in all sorts of activities from sensory play, songs (there is lots of singing in his class), stories, crafting (Samuel’s school seem to like to use A LOT of glitter!) to baking (although we never saw the shortbread he helped to make as they got burnt in the oven!).

elfThe school put on a fantastic little Christmas play which was really fun to watch. And although he didn’t have a starring role, Samuel did fulfill a very important role on the stage as an elf. Samuel the Elf.

But there is so much more to Samuel’s school than that. He now has weekly hydrotherapy sessions which he finds very relaxing, very regular physio, an occupational therapist who adjusts his special buggy when required plus finds the best equipment and seating that is appropriate for his needs, plus there are speech and language therapists who work with him on communication and sensory play.

To be honest I could go on and on about Samuel’s school. I absolutely love it. It is such a wonderful place and perfect for Samuel. Plus, although they do work the children hard (even those who try to avoid work by going to sleep), there is still plenty of cuddles given out.

The nursing team are wonderful too and very quickly seemed to understand Samuel and his epilepsy (well as much as anyone can). They aren’t fazed by him at all and do everything they can to make sure he’s content and comfortable every day.

Unfortunately though, Samuel’s attendance has not been great. Perhaps it has been because of being in a new environment, but Samuel has been catching quite a lot of bugs and developed infections since the start of the year. I started referring to him to his teacher as ‘Sicknote’! But when he’s in school they look after him really well and do so much with him.

He’s even been awarded two certificates which were given to him by the Principal during assembly.

And you know, there was a time that we never dared dream of Samuel going to school. Who would have thought that a child as complex as Samuel would be going to school four days a week?! But here he is going to school on his own on the minibus (he travels with two Passenger Assistants) like a big boy.

I can’t tell you just how proud we are of our special, brave and gorgeous little boy.


I love stars. I always have. And then we had Samuel. It became clear pretty quickly that we might lose him. I don’t think the doctors thought he would survive his epilepsy, especially as they were struggling to find the right concoction of medicines to go somewhere near to managing his seizures (it’s impossible to control Samuel’s epilepsy, we just manage his breakthrough (physical) seizures).

Look at the stars, look how they shine for you

There was lots of talk in the early times of ‘family time’ and we were encouraged to enjoy Samuel to the full as his time was expected to be very limited. So I looked to the stars. I remember in those dark early days of looking at the stars and saying to myself that if we did lose him, Samuel would become one of the brightest stars in the sky. Even if he wasn’t here with us on earth, he would always be shining above us in the sky. And that made me love stars even more. I thought that as long as there were stars in the sky, Samuel will always be with us. Forever.

Yeah we all shine on, like the moon and the stars and the sun

Samuel will always be our star.


Looking for rainbows

I’ve been wanting to pick up the laptop and log on to the blog and write a post for ages. For such a long time.  But the longer I left it the harder it felt to get back into it. But I want to get back to the blog. I want to tell you about my boy Samuel and how he’s getting along. It suddenly dawned on me that you might forget about him if I don’t keep telling you about him and what a wonderful boy he is. I am so proud of him and I want to share that pride with you.

But these last six months have been tricky. Very tricky. They’ve been wonderful too as we now have our little Toby, our ray of Sam blogsunshine. But for Samuel they’ve been incredibly tricky. He’s had infection after infection and so far this year three hospital admissions. I know for a child like Samuel you might think that three isn’t very much, but for him it is (these three hospital admissions don’t include the numerous times this year that we’ve had to take him into the assessment ward to be checked out etc). For a long time we’ve got away with so much. Epilepsy aside, he was doing really well. His overall health was really good and we had no other concerns. Now we worry constantly about the next chest infection, we have to monitor his breathing more closely and he just feels even more vulnerable than he did before.

These last six months have been the worst six months of Samuel’s life. If it wasn’t for Toby we would already write off this year. But we can’t. We have so much to be thankful for. Toby has brought so much sunshine into our lives and he’s reminded us to look for rainbows after the rain. Plus Samuel still continues to be the most beautiful, wonderful boy who we adore with all our hearts. He brings so much pleasure to us and is worth all the worry and stress. He is our cuddly Bear. Our star.

There is so much I want to tell you and I will I promise.

Introducing Toby….

A very big belated Happy New Year to all readers and Sam fans. Sorry that this blog has been awol for some time, but we are hopefully back and can keep you updated to what’s been going on here.

Well 2014 couldn’t have started any better for us. Samuel became a big brother! His little brother Toby was born on 2 January.

TobyToby is a sweetie and we are really enjoying him (although exhausted!). Not sure whether Samuel is that impressed with having a squawking little thing in the house, but I think he’s enjoying his share of cuddles with all the visitors who’ve been popping by to see his little brother.

Toby is a very different baby to what Samuel was, as you might be able to imagine, so we are Sam and toby1learning A LOT! We’ve been very lucky though to have fantastically supportive people around who have just been wonderful (particularly Auntie C who continues to be amazing with her continued love, support and brilliant advice!) .

We are feeling so very blessed to have our wonderful little family.

From all of us at Team Sam headquarters, we wish you all a very happy and very healthy 2014. x

Let’s talk vests

Recently I’ve noticed, while putting Samuel into his age 2-3 popper vests, that really he should be in age 3-4 vests as they are getting a bit snug. I mean afterall, he does turn 3 next month (I may be mentioning that quite a bit lately). They are getting more and more snug fitting, so I decided to look at getting him the next size up.

BUT, the problem is it is quite difficult to buy poppered vests on the high street for age 3-4. I suppose it’s because children of that age/size are expected to be entering into the fun world of potty/toilet training, so no longer want to have their vests poppered up. But the thing is Samuel will always be in nappies and I’m a great fan of these vests because they keep his tummy and sides warm (Samuel can be a very cool young man and I don’t mean in just a cool dude type way), plus when poppered up they protect his gastrostomy button.

I came across a couple of websites that stock vests in the size we want, but then I heard that it is possible to get vests that popper up in such a way that you can easily access the gastrostomy button without having to unpopper the vest at the bottom. Brilliant!

So I looked around and found these ‘Joey’ vests from Rackety’s. Now, they are expensive (which is why I’ve only bought a few to start with) image image– what you would pay for one vest is probably more than what you would pay for a pack of the ‘normal’ ones from the high street, but they are just what we need. It means that Samuel can wear a vest under a jumper or t-shirt and we can easily access his button without having to unbutton his trousers and unpopper and pull up his vest. But it also means that when it’s not in use, his button is protected. Which is handy for when he’s handed over to people for cuddles. I know I should have just bought some size 3-4 vests (which are still very expensive) and made the adjustments myself, but with everything going on at the moment, I just don’t have the time (or the attention span) to do it myself!

Unfortunately the website only had the short sleeved ‘Bruce Willis’ style vests (think Die Hard films – but I don’t think Bruce’s had poppers) in stock, but I will be on the look out for long sleeved ones when they are available. But at least we have these for now (plus they fit him!!). Oh and they are available in white and navy. Pop over to and take a look.

PS This blog post has not been sponsored or paid for. I just thought I would share my new found vest knowledge in case it is useful to someone.

Return of Mr Lashes

I thought I was coming out of my blogging hiatus but my disappearing act yet again proves otherwise. imageThere is so much I always want to tell you about what Samuel has been up to, but finding the focus to properly sit down and type it out is another matter.

Despite the odd hiccup (like Samuel being taken by ambulance to hospital recently due to over sedation & the odd visit from the nice, friendly paramedics), oh and Sam’s current chest infection, things are going OK. We are plodding along as usual. There still feels so much to do before the end of the year and before Samuel’s little brother arrives, but I’m sure hoping it will all come together in time.

The most important thing to tick off the list for this year though is Samuel’s birthday. My boy, my brave, cuddly, beautiful boy will be turning 3. Make sure that you all do something extra special on Sunday 10 November. For us it will be a day of love, cuddles and feeling proud and thankful…I can’t wait.

Here are just a few things that have been keeping us busy recently:

The Midazolam effect

Samuel has been on Midazolam for a very long time. Almost since the beginning in fact. It’s given to him as his emergency medicine when imagehe has had a seizure lasting longer than 10 minutes or a cluster of 4 in 30 minutes (and when I say seizure I mean a focal seizure, not his twitches & jerks). We have a monitor at home that measures his heart rate and saturation levels (oxygen in the blood) which we put Sam on when he’s had this medicine, but at the encouragement of his doctor we would only do spot checks, not leave Samuel on the monitor for a prelonged period. But then we started to do so, leave him on the monitor after Midazolam and the monitor started to show that his SAT levels dropped significantly while he was under Midazolam sedation. Although the first rule is always treat the patient not the monitor, it was hard to ignore what the numbers were saying. So reluctantly the doctor issued us with a perscription of oxygen. So we now have one big 15l cyclinder and four small ones lurking about the place for when he needs it. And he’s needed it. It’s become part of his protocol now that Samuel has oxygen after Midazolam – although to reassure Dr H (in case he’s stumbled over this blog), we always pay attention to what Samuel looks like, his colour & breathing, rather than just focus on what the numbers say. Treat the patient not the monitor. It was disappointing having to have oxygen in the house as we’ve got away without it for so long. But our primary concern, our priority in fact, is Samuel’s comfort, so we won’t complain about it.

Medicine medley

I mentioned before that we were looking to wean Samuel off Clobazam. It is a medicine he has been on for a while, it is a strong medicine and a sister drug to Midazolam, Samuel’s ’emergency’ medicine. The doctors were concerned about the two medicines conflicting with each other and adding to the over sedation effect of Midazolam. So we started a slow wean off. But it backfired. It was clear when we had got half way through the wean off that Clobazam was an effective medicine for Samuel. We were really struggling on the low dose. Samuel was really struggling. So we decided to reverse the wean and go back to the original dose of 5.5mls and I think we will be sticking with Clobazam for a quite a while.


So Sam fans who’ve followed this blog for a while will now the saga of the Ketogenic Diet. We started it over a year ago in the hope it will help Samuel’s epilepsy.  Well he was on it for over a year and while there were the odd times that we thought it was working and helping, it wasn’t consistent at all and it had quite an adverse effect on Samuel’s bowels and weight. So we all agreed to come off the diet. And this week he did. We are no longer on the Ketogenic Diet. It is really sad that it didn’t work for Samuel but the important rule to follow is do no harm, so it was best all round for him to come off it.


After a lot of paperwork flying around and assessments, on Tuesday 3 December, Samuel will be starting school! I can’t tell you how wonderful the school is that he will be going to – it’s absolutely perfect for Sam. He will be going for three days, which will include a weekly hydrotherapy session which Samuel will love. It will also mean that most of the professionals who work with Sam – physiotherapist, occupational therapist, child development doctor, dietician, speech and language therapist (who works with children on communication) plus the wheelchair service, orthotics team etc, will see Samuel while at school – so I won’t have to shlep him around to different hospital appointments. But besides all that the school is simply amazing and provides excellent medical support, so even though I am hugely nervous about it all, I know that once I leave him there, he will be well looked after. There was honestly a time when we couldn’t consider school for Samuel. We didn’t think he’d still be here to be able to go. I cannot tell you how proud we are of him.

See you later alligator….

To do list

So we have a few things that we need to do before the end of the year:

New special bed

We have finally been approved for Samuel to get a new special bed. It will be able to go up and down and tilt at both ends and will be perfect for Samuel. His new big boy bed will be standard single bed size.

School place

We have had confirmation that Samuel will get a Statement (special educational needs) which is no surprise at all! Fortunately it has been recommended that Samuel attend the same school that we want him to go to – it is the only school in the area that can cater for Samuel’s medical needs as well as development needs and it is just a wonderful school. We now have to wait for the school to confirm that they have a place for Samuel and when he can start. When he starts I will sit in on his sessions while the school get to know Samuel and his seizure protocol. The school has a number of nurses on site and the lead nurse knows Samuel’s doctor very well and is in fact studying for a Masters in epilepsy! Once everyone has got to know Samuel, I will next tackle the issue of whether Samuel can go on the school transport – although I will need reassurance that the escorts on the minibus are adequately experienced and equipped for the 25 minute journey to and from school. I’m a bit nervous about that. In fact I am really quite nervous about it all really!

Garage conversion

We are waiting for a start date for work to begin on Samuel’s new bedroom and wetroom. It will make life much easier and more comfortable for both Samuel, us and his carers – especially as we look to have overnight care support. The wetroom will have a shower and Samuel will sit in a shower chair which we can just put him in and wheel him into the shower. It will be much easier than lifting him into his bath chair in the bath as we currently do.

We have decided on a ‘twinkle twinkle’ theme for Samuel’s new bedroom.

Samuel’s birthday party

Samuel turns 3 in November. 3. There was a time that we honestly never thought we’d get this far and to be honest, sometimes we still feel like we want to pinch ourselves. We want to arrange a proper party for him this year and invite his pals and those that love him.

Wheelchair accessible vehicle

When Samuel turns 3 we will be eligible to get a wheelchair accessible vehicle. Samuel will be able to sit in his special buggy and be wheeled into the vehicle and strapped in. We wont have to lift him in and out into his car sit or take out & put together his (heavy) buggy. We have ordered a VW Caddy Maxi Life. And we’ve chosen blue, if you are curious.

Nursery for baby Buddy

When Samuel moves into his new bedroom, we will need to sort out the room he leaves and transform it into a nice nursery for his little brother. Our theme will be Noah’s Ark/jungle animals.

Care plan for Samuel for when baby Buddy arrives

We need to start thinking about care provision for Samuel for when the baby arrives. We currently have two professional care providers – one being Julia’s House. Plus are are lucky to have the very wonderful Auntie Carol and my very good friend Leela who will be coming on board and be trained to be a Samuel carer and official cuddle provider! The tricky part will be the ‘the baby’s on his way!’ time when we have to call people in at short notice. I think I’m more anxious about this than the actual giving birth part!

So the last few months of 2013 will certainly be interesting and busy!

Sam’s Buddy

imageJust a note to say that all is going well with baby Buddy. We’ve had our 20/21 week scan and all is looking good.

Although Samuel’s condition is not an issue with this pregnancy, I’m going to have scan at 30 weeks just for my own piece of mind. My 20 week scan with Samuel was fine, it was only when we went in for a growth scan at 30 weeks did we discover the abnormalities with his brain. I know everything will be fine, but if there are any issues then I know we will handle them. Samuel’s Dad and I make a good team.

And as for Samuel, as long as he gets as many cuddles, if not more, when Buddy arrives then I don’t think he really minds about a new little person in the house!

Ketogenic diet – end of a chapter

You may have guessed from the title, but Samuel will be coming off the Ketogenic diet. He’s been on it since April 2012 and while we’ve had lots of ups and downs with it, we always had the hope that it would really help Samuel. But his weight is starting to stall, he’s not gaining and his poos are looking very yellowy (he is not absorbing his fats, they are coming out in his nappies) like they did last year prior to him losing a lot of weight and us moving over to the Plan B version. There is no Plan C version.

I don’t want to wait until he starts losing a lot of weight before we come off. We need to act now.

Do no harm is the first rule of medicine and care after all.

We aren’t convinced that the diet is helping him now and it certainly isn’t giving him any help during his current wean off/wean on plan.

So Samuel will be coming off the diet. In order to do so we will have to increase the carbohydrates in the diet until they are at a sufficient level for him to move over to a new feed. The wean off will start this week and the dietician has given us a plan to work to.

We feel very disappointed that it didn’t work. We so, so wanted it to work. Plus we might find that we have to replace the diet with a new drug, which I would like to avoid if possible – the diet is counted as a drug – but Samuel will tell us what he needs in due course.

But a new chapter begins. And there are positives for coming off the diet:

  1. Samuel will be able to come off Potassium Citrate (used to prevent kidney stones which can occur when on this diet) and his vitamin supplement (as the new diet will have sufficient vitamins for him).
  2. We will be able to resume sensory tasters – as Sam’s diet is so strict and carb and sugar free, we’ve not been able to give him anything to taste at all (Samuel cannot take feed or medicines orally, but he can have small amounts of food & flavours put on his lips for him to taste). The only thing he has to taste is when he has a suck of his paracetamol syringe and his vitamins syringe as they both taste fruity (but are ok on the diet). But when he is off the diet, we can explore tastes and textures with him.
  3. A new ‘all in one feed’ will be so much easier and quicker for us to make up. Well we will just be pouring it into a feed bottle whereas currently to make a feed, it takes a bit more effort:
  • 54 mls liquid Ketocal
  • 15 mls Liquigen
  • 3 mls of Maxijul (scoop of Maxijul, add 4mls water then use 3mls)
  • 7g Carbohydrate-free mix (add enough water to mix into a smooth paste)
  • Add water to make a total feed of 220mls

So yes it is the end of a chapter, but we are ready to move on and looking ahead positively. It is just the start of an exciting new one after all…

Medicine medley

During my hiatus from the blogging world, we’ve been having a bit of a rejig of Samuel’s medicines. In fact we have commenced a wean off one medicine and weaning on a new medicine. This might not sound much, but it in actual fact it is quite a scary time.

Samuel’s staple medicines for a while have been Clobazam and Vigabatrin, with the Ketogenic diet alongside (which is counted as a medicine). Clobazam has always been a good medicine for Samuel. Strong and effective. But we are weaning off.


Well he’s been on it for quite a while now and the doctors have for a while been muttering that ideally we could look at coming off it in the not too distant future. But it was brought to a head when we realised that Clobazam and Samuel’s emergency medicine, Midazolam, were interfering with each other. These two medicines are like ‘sister’ drugs. They are from the same drug family. And they can affect each others effectiveness as they dull the same receptors in the brain. We know that if we’ve had to give Midazolam and it’s not far off medicine (ie Clobazam) time, then Clobazam wont be anywhere near as effective as usual. Plus, the combination of the two has more recently interfered with Samuel’s breathing and SATs (which has led us to have oxygen at home, which we hope will be a temporary measure).

Thankfully we’ve avoided too many incidences where we’ve had to give oxygen and this has been because we’ve been able to avoid giving Midazolam. Not because Samuel’s seizures are much better, but because we’ve been breaking the cycle of his seizure activity by giving an additional dose of Chloral Hydrate (this is Samuel’s sleepy drug he has at bedtime), which sedates him and most of the time stops things escalating which would usually see him needing Midazolam – plus it is thought that Chloral also contains anti epileptic properties which is another bonus.

So we, well Samuel, is coming off Clobazam and we have started to introduce Keppra. It’s a drug that we’ve not tried before and we aren’t sure at what dose we will have to get to that will be the dose he needs for it to help him.

And how is it all going?

Since we started the wean off Clobazam, things have been very, very rocky. We’ve not felt that we are in serious trouble, yet, but rocky enough to be concerned. The wean on of Keppra is very slow and it is nowhere near at any level to be of any help to Samuel yet.

So we are having to make ourselves be patient. And hold on for the bumpy ride ahead. We know it will get worse before it gets better and that is a bit daunting, but I don’t think it’s anything different from what we’ve faced before. But it doesn’t make it any easier.

Seeing your precious boy every day have a seizure where his body stiffens and twists and he cries, he screams, will never be easy for any of us. So getting the right drug concoction and the right dose is so important. It’s everything.

Medicine trivia

For those interested and ask about what Samuel is currently on medicine wise, here’s an update:

  • Clobazam – twice a day (due to finish early October)
  • Vigabatrin – twice a day
  • Keppra – twice a day
  • Lansoprazole – once a day (for reflux which Sam is expected to have but not sure if he actually does)
  • Potassium Citrate – three times a day (to prevent kidney stones which can happen on the Ketogenic diet)
  • Fruitis – once a day (vitamin supplement)
  • Chloral Hydrate – once a day at bedtime, but additional dose in the day can be used
  • Midazolam – whenever he meets his seizure emergency plan (generally it’s if he has a focal seizure where he stiffens, for longer than 10 minutes or when he clusters and has about 4/5 stiff focal seizures in 30 mins – worth noting that Samuel regularly displays other ‘seizure activity’ during the day but we have to be selective about what we treat as if we didn’t, Samuel would be sedated every day)

That’s quite a lot to put in to one small little boy’s body, don’t you think?

But at the top of his medicine list and his emergency treatment plan there is one important word. Cuddles. And he overdoses on those every single day.

Missing in action

imageI’ve been so aware lately how neglected this blog has been for a while. It’s strange because I think about blogging a lot, I think about what I could, should write about. But I seem to lack the motivation to get in front of a screen and write out how things are and what we’ve been up to. That doesn’t mean that things have been really bad, it’s just there has been a lot on and sometimes I feel I just don’t know where to start with writing it all down. I think I might have lost my blogging mojo for a while.

But I’m hoping to get things back on track and update you with what the boy, our Samuel, has been up to…

See you later alligator.

But it wont be too big a while crocodile. I promise.