An O thing

20130112-125249.jpgSo, we spent the last week in hospital. ‘What?‘ You say. ‘I didn’t know about that‘. Well reader I would have written a little post if I could have done (mainly to relieve my boredom) but the signal was so bad that my phone was rubbish! Anyway, I digress…

At 8pm on Tuesday we had to give Samuel his emergency medicine Midazolam as he was clustering and we couldn’t wait for his evening medicines to kick in (which we had just given him). After having Midazolam, Samuel often has quite an elaborate wind down with lots of fussing and this time it was no different but he then started to cough up A LOT of phlegm.

Once he’d calmed down and was sedated hi20130112-125304.jpgs breathing started to very quickly become quite laboured and exaggerated and he was flaring his nostrils. We checked his SATs and they were quite poor. So we packed him up and took him into hospital.

As soon as he was in hospital he was put on oxygen and hooked up to a saturation monitor and you could see the  instant benefit of the oxygen.

To cut a long story short, they think he might have had a virus which had caused the breathing problems. He started off on 90% oxygen but quite soon we were able to start weaning him off. He was initially given an oxygen mask, then he was put in an oxygen box (which looked like a little greenhouse), then as he was taken out of the box and given nasal prongs.

While in hospital, Samuel’s epilepsy was very bad. Not sure if that was just a coincidence or something to do with the virus (he was also a bit constipated which may have contributed). He had several doses of Midazolam and we had to grit our teeth and hope this wasn’t the start of something else.

It was also frustrating that Samuel’s brilliant paedetrician, who is the one person at the hospital who knows and understands everything about Samuel (as much as that is possible), was on holiday, but the nurses were brilliant and I think the other doctors are starting to get the hang of our little tricky customer.

As hospital stays go, it wasn’t too bad. We could see that as far as the virus was concerned he was getting better. His seizures did calm down and he didn’t have any emergency medicine yesterday (Friday). I also wasn’t alone during our stay. Although Samuel’s Dad had to go to work, two of my lovely Mum-friends from Julia’s House were also in hospital with their children, so we had a chance for a good natter.

We’ve got to see how things go, his breathing is back to normal but he’s still jerky and while I’ve been writing this he’s had a couple of short seizures. It might all be fine or he might end up having some emergency medicine before the end of the day.

Either way it is great to be home.

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Fats and Fits

TUESDAY

So, day two of our hospital stay. Not quite sure what to say really. We’ve started Samuel on a medicine called Pancrex to help him absorb fats better. He started on 1.55ml yesterday but we’ve cranked up the dose today. So far we’ve not seen a difference. Dietician is still not happy with Samuel’s nappies and quite frankly, as the one changing them, neither am I!

Pancrex is an odd gloopy medicine that I make from a powder and water. It is probably the ugliest medicine I have seen with a very creepy smell.

Seizure wise? They are getting worse. He had Midazolam yesterday afternoon but woke up after a three hour snooze unsettled, which carried on through the evening. At 10pm he had 6ml of Chloral Hydrate and thank goodness for that as he finally relaxed and went off to sleep.

He woke then at 3.30am and was twitchy on and off from then. Today has so far been very strange, his sleeping pattern is very different and he is very twitchy.

We are all hoping that this is to do with his weight loss. He’s not absorbing his fats, so losing weight which is reducing his ketone levels (0.5 today) which could be why his seizures are rapidly increasing. Hopefully if this new medicine works & he puts on weight then we will see an improvement in him. Well that’s what we are hoping and praying for.

I want to end this post all chirpy and upbeat but struggling with that to be honest. It’s obvious that we will be here for most of the week, but at least the nurses, doctors and our poor overworked dietician are all fantastic and all trying their damndest to help Samuel.

WEDNESDAY

After ketones of 0.5 and 0.4 yesterday, it was quite a nice way to start the day with reading of 0.6. Still ridiculously low but at least it’s an increase, if only a slight one.

The dietician had asked me to save her Samuel’s morning dirty nappies (brave woman) and I was pleased to see they looked better. Less, well, fatty. A poo sample is also being sent off to the lab.

Our plan now is to stay in another 48 hours, increase the enzyme medicine some more and keep monitoring his nappies and ketones. It will take a bit of time for us to see a weight gain though.

In the meantime we just have to brace ourselves and use the medicines we have in our armoury to keep the boy comfortable.

So far today has started off much better than yesterday, so I’m feeling cautiously optimistic. We’ve just got to wait and see.

Oh and you may be interested to know that this situation of a child on the ketogenic diet having to use these enzymes is rather unusual. In fact they don’t know of many any in the country it would seem. Why am I not surprised?!

UPDATE: This evening it was discovered (despite numerous different people listening to his chest since he was admitted) that Samuel has a chest infection on his right side. Chest infections are one of the things I fear for Samuel so did panic me initially but he’s been started on a course of antibiotics. Infections can reduce ketones. Is this why his have been so low? Will my son ever stop throwing us curve balls?

THURSDAY

8.30am: Despite having Midazolam at about 4pm yesterday, he ended up having another dose around 9pm. He then settled and had a good night. So far this morning he has been very relaxed and it’s nice to see him so settled even before his morning medicines.

10.30am: It has been suggested that slowing down Samuel’s feed may help his fat absorption. I was asked whether it would work at home having Samuel on a 20 hour continuos pump feed. My response was a big NO, it wouldn’t work. I think the plan may be then to have a very long feed over night and a couple of slightly slower feeds during the day. This should fit in ok hopefully with our daily routine. Well I very much hope so.

9pm: Today has been a much better day. Samuel was very snoozy this morning and although twitchy and did have a number of seizures, he didn’t have any Midazolam and has gone off to sleep on just his usual drugs.

We can also report from Camp Sam that his ketones were surprisingly high this evening, 1.9. Not going to get too excited yet as who knows what is in store for us tomorrow.

FRIDAY

8am: Samuel had a good night overnight, he slept through like a good boy. But, he was put on a saturation monitor overnight and it was showing that his SATs were low so he needed oxygen a lot of the night. I think this will probably mean we will be in hospital for at least another night. Because of the chest infection.

Back to the original reason we came into hospital, we’ve got a new feeding plan which I’m trying to get my head around. It’s confused me as we are reintroducing night feeds and the day feeds are so long (2 hours) I’m not sure what that will be like at home to manage. But if it helps his gut, then who am I to complain!

His ketones were 0.9 this morning so at least they are moving in the right direction.

It’s all a waiting game really.

MONDAY (17 September)

Chest infection: Samuel’s sat levels overnight are causing a headache. They keep sitting at 86 which nurses aren’t happy with and have to put him on oxygen. They want his sats to be in the 90s, preferably above 95. It could be because it’s just Samuel, the medicines he’s on at bedtime, or it’s still a bit of a hangover from his chest infection.

Diet/fats: This weekend Samuel ketones were 0.8 and 0.6 but this morning they were 1.0 which was very pleasing to see. We also weighed him and his weight has gone back up to what it was when he was admitted (it dipped during the week which was thought to be because the antibiotics were causing loose nappies).

The dietician has been to see us and wants to move Samuel into a tailor made version of the ketogenic diet which should be better for his gut. She has also suggested we increase the speed of his feeds as long feeds may affect ketone levels. She will come back later with a new recipient and feed plan.

The only complication is his saturation levels and whether he needs oxygen. That is what is going to keep us in hospital if the doctors are concerned. The gastro doctor is away today but Sam’s paediatrician is due to visit later so hopefully I will be able to report back later with some good (fingers crossed) news.

TUESDAY

I have some good news for you. We had a pow wow late yesterday with Dr H, Samuel’s paediatrician. We agreed last night to halve Chloral and get nurse just to do spot checks of his sats (instead of leaving him hooked up to the monitor all night) and if Samuel behaves himself then we can go home Tuesday/Today.

Well he did behave and wasn’t put on oxygen at all. Our nurse was fab too (but they’ve all been wonderful I must say).

We now just need the dietician to be on the ball today. We are going to move to the new feed recipe of some ketocal & a new concoction. The dietician said she should have everything ready to start at lunchtime. So if we are freed today, it probably won’t be until late afternoon. Or possibly early evening as we will need to get some bits from pharmacy.

So there is light at the end of the tunnel. But I’m not getting too excited yet. Who knows what the day holds. I’ll save my excitement for when we are actually home and my boy is back where he belongs.

3pm: Well, we are being freed!! The dieticians want to have a play with the new concoction we’ll be giving Samuel. So we’ve agreed that we’ll go home this afternoon BUT will come in as a day patient for a few hours tomorrow to start the new recipe and to weigh the boy. We may also have to come in again on Friday but we are going to see what happens. It’s a pain to have to come back in but knowing that we’ll be able to go home afterwards is fine. And if it helps my little boy then…..

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.

Tricky customer

Samuel is going into hospital on Monday as an inpatient to start the ketogenic diet. I like our hospital, well as much as anyone likes a hospital. I’m use to it. We got there a lot for appointments or to pick up something – like tubes or new feed. To me it’s just a building where they treat poorly people. The doctors and nurses I’ve met there are really nice. The nurses always seem to fall in love with Samuel quite quickly and are really kind and gentle with him. Also, we are very lucky that Samuel’s pediatrician is wonderful (I’m a bit of a fan of his).

But I must admit I am nervous about going in next week. Samuel isn’t having any invasive procedures, he’s not going under the knife or being given general anesthetic. But I still am nervous.

I’m nervous because of his seizures. As the pediatrician put it, Samuel has off the scale epilepsy. Doctors and nurses are trained, are programmed, to treat seizure activity when it occurs. But you don’t do that with Samuel. He has seizures every day, so you would be sedating him every day. As I’ve said before, some seizures you just let happen, you cuddle Samuel and hold on for the bumpy ride until he’s settled again. Sometimes he twitches a lot. That is seizure activity. It unnerves doctors.

Last year we had to take Samuel into hospital because of his seizures (Better late than never). The doctor was a really nice guy. But I almost had to wrestle the emergency seizure medicine off him. We were having a rest in the parents room when the nurse called us to say that they might have to medicate Sam. As we approached the cot the doctor was prepping Samuel’s canula to give him some intravenous medicine. Samuel was twitching. Just twitching. The doctor said that he had seen what Samuel had done the night before (the previous evening was a very rough ride for us all) and said he anticipated that Samuel was about to do the same. I said no. That’s not how we treat his epilepsy. We have to wait and let it become something before we medicate, we don’t medicate just in case (that would mean he’d be medicated every day). I asked the doctor for five minutes more, just give him five minutes. And he did. I got Sam out of his cot and we had a cuddle. The twitches, the ‘seizure activity’ stopped. He settled. Oh yeah, he then went off to sleep.

When we see new doctors, doctors that haven’t met Samuel before, there are always the same questions. Now I know doctors have to ask these questions, it would probably be wrong if they didn’t. But I just find it difficult when the doctors first meet Samuel and are still looking at him through ‘textbook epilepsy’ eyes (I do of course appreciate that there isn’t textbook epilepsy):

  • How many seizures does he have in a day?
  • You realise that this is seizure activity? (Pointing at the twitchy, jerky movements that I haven’t appeared to acknowledge. But I always know every movement my boy does, I just don’t make a song and dance about it every time)
  • What do his other seizures look like?
  • How long do they normally go on for?
  • Is this normal for Samuel? And this is the question I do like because I respond by very enthusiastically saying ‘YES! This is very normal for Samuel.’

And that’s it, what Samuel does is normal for Samuel. It isn’t normal outside of our bubble, but in his bubble it is what he does. He has an abnormal brain, that is why every EEG he has had has always come back the same. As we always say it ‘abnormal, but normal for Samuel’.

The other thing that although doesn’t annoy me, I do find strange is the enthusiastic wafting around of oxygen. Samuel doesn’t have oxygen at home. We have never had oxygen at home. When we came home from NICU we came home with a barrel full of medicines but no oxygen. It was always felt by the doctors in NICU that oxygen didn’t really help. He’d either come out of the seizure by himself or once we’ve given him emergency medicine. This really surprises people but his body seems to cope. with one type of his seizures, when he first starts, his lips very briefly go blue, but then they return to normal. I do thank our lucky stars every day (yes readers, we are extremely lucky) that Samuel doesn’t need help breathing and know that in the future it might all change. But for now it’s a nice feeling I can tell you, knowing your child can breathe independently and not require help.

So when the nurses say ‘shall we give him some oxygen?’ I always respond with ‘well you are very welcome to but we don’t have it at home’ And they do give him a big old waft of oxygen.

Samuel’s pediatrician, have I mentioned I’m a fan? will be around in the background and he is very in tune with our boy, so I do keep reminding myself of that which makes me feel more relaxed. I know he will do everything he can to ensure that the doctors on shift understand as much as anyone can about the quirks of Samuel and what to do and when. And hopefully the doctors and nurses will quickly learn the mantra of: ‘KEEP CALM AND ASK MUM’

I’m not sure the point of this post. But I think it just confirms that for nurses and doctors, Samuel is most definitely a tricky customer. I probably should get him a t-shirt made with that on!

Celebrate: The ultimate milestone

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

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

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

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

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

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

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

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

Team Sam. x

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

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

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Diagnosis – what’s in a name?

Samuel got his official diagnosis last April (2011). We were told he had ARX. But we’d already suspected that would be the case because his neurologist (who I continue to be in awe of) suspected that this is what he had and was keen to have him tested for it, so it came as no big surprise.

So we have a label, a name. I’ve been thinking lately if having that diagnosis, you  know, being able to read about ARX, has actually made much of a difference to us and I’m not sure it has. From MRI scans we already knew what his brain looked like. We already knew his seizures were severe and hard to control. We already anticipated that he would have some kind of development delay. I suppose for some people and their parents it’s like putting the bits of the jigsaw puzzle together to be able to understand what they are dealing with.

At Samuel’s diagnosis meeting last Spring we discussed prognosis (ie life expectancy). The genetics doctor told us that it was very difficult to be precise of course and it would take a brave and bold doctor to start talking actual numbers with parents. But then my husband asked if it was months. Did we have only months with Samuel? And her answer? She said yes. That was almost a year ago. The neurologist, who was unfortunately not at that meeting, said later that with Samuel’s condition being so rare, it is extremely difficult to be so definite. There are only a small number of children known to have had ARX in this country, so they are basing their information on such a small number of case studies (plus Samuel has a rare mutation of the (rare) condition). I gather the stats are that 1 in 400,000 babies are born with ARX. So that didn’t help us at all.

It makes form filling a bit easier. We actually have something to fill in the box when asked about the condition. But no one has heard of ARX, so we have to explain in some detail what it actually means.

I know for some parents and I’m sure the individuals themselves, having a diagnosis will at least be that missing part of the jigsaw. Instead of having to just explain the child’s symptoms they can actually give a name. But for us, we tell people that Samuel has ARX but then have to give the symptoms as no one has heard of it! I always wonder if life would be that little simpler if Samuel had an ‘off the shelf’ condition. Something that people have heard of, seen on the TV and have a vague understanding of.

Despite our experiences, I do believe that a diagnosis can be such a positive thing. Last week I was encouraging a close relative to refer her child to be assessed as suspicions are that the child maybe on the autistic spectrum and if that is confirmed at least their parents and school will be better informed about how they can help them.

But for our Samuel, well he is still here, battling away each day. He’s surprised all the doctors with just how well he is doing. Since we came home from NICU last January (2011) we have only had one emergency admission and Samuel seems to otherwise be quite a healthy boy.

The important message to all parents seeking the golden chalice of diagnosis is when you get it, don’t let it define the child. Because Samuel may have ARX but that boy is making up his own rules.

I would be really interested to hear your views and experiences of the difference of having, or not having a diagnosis and what it has meant for your family.

UPDATED: Since publishing this post, we’ve had an appointment with the genetics consultant to talk about our options for future pregnancies. I talked about the appointment in Is the impossible, possible? and talked about the options we’ve been given from taking on a dangerous gamble and conceive naturally, have IVF PGD or be on the receiving end of egg donation. The genetic doctors are able to tell me the likelihood of having more children with ARX what our risks are because we have a diagnosis. We have something that the guys in the lab can work with. Since Samuel’s diagnosis they were able to find out if I was a carrier which means we can make decisions about future pregnancies. We know how to not pass this on again. That’s what a diagnosis has done for us. It has stopped us passing on this dreadful condition. It ends here with Sam and I.

Hayley from the blog SwanFreddie has also written a post about diagnosis and why it is important to her family, so please do pop over and have a read. Eric from Pressure Support has also done his usual thing and written a fantastic post about his son Liam’s diagnosis. Definitely worth a read.

Believer in hope

We finally have a date for Samuel to go into hospital to start the ketogenic diet. Assuming that he doesn’t suddenly come down with a bug and that there is a bed available, we are booked to go in on 23 April.

If you have not heard of the ketogenic diet, well it is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily 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 transported 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.

I have butterflies in my stomach. I so want this diet to work. To have a positive effect on Samuel. Even at the very least if it means that he just comes off one medicine, that would be fantastic. But I know for some children it has done so much more and made a huge difference to them. I know of a little girl that belongs to Samuel’s hospice and by a year after she started the diet she had come off all her medicines. The diet has made a huge difference to her in other ways too.

The idea of it having such an impact on Samuel, well I can’t put into words what that would mean to all of us. Could it mean that we come of one/some/all of his medicines? Would it allow him to develop – could he finally reach a milestone? Will he be almost/totally seizure free?

Samuel’s doctor has told us that they give the diet three months to see whether it is working. Some children show an improvement very quickly, while some show a slower response. If after three months sufficient ketones are being maintained but there have been no beneficial changes then the diet is stopped. For Samuel it would mean that the doctors return to the drug book and review the cocktail he is on and possibly take him off one and add a new medicine to our drug box.

I hope with every part of me, I pray, oh goodness do I pray and have everything crossed that this does work for our boy. If this works reader, oh my god, if this works it could change everything.

Please hope and pray with us. Team Sam..x

For more information about the ketogenic diet visit www.matthewsfriends.org

Take the rough with the smooth

Well readers, we seem to be having quite a good period at the moment. Very good in fact.

Please don’t get me wrong, Samuel is still having seizures every day. But at the moment he doesn’t seem to be having as many in a day as previously and instead of being quite low, they are quite short and sharp.

We are often asked how many seizures he has in a day and as we don’t keep a log it is an impossible question to answer exactly. But our staple answer is between five and 15. It just depends on what kind of day we are having and often no two days are the same. For no reason, he could have two dramatically different days. It is just the way things are.

When things are going well we average about two weeks in between giving him Buccal Midazolam. Midazolam is his emergency medicine. The dose we give him at the moment is 0.5ml and as it is a buccal medicine you give it orally (the only thing he has orally). You put the syringe into the mouth push it against the inside of the cheek and then squirt. His system absorbs it very quickly, although it can take between five and 10 minutes for him to unravel from the intensity of the seizure and go to sleep.

Samuel’s current emergency plan is that we give him one dose of Midazolam if he’s been having a seizure for over 10 minutes or he has had a cluster (of say about four or five short ones) in half an hour. We can give him two doses in 24 hours but if he needs more than two doses within 24 hours or when he wakes up from the second dose and we are worried we have to take him into hospital. So far we’ve not needed to call an ambulance and only taken him in twice. We have open access at our hospital which means we don’t have to go via A&E, and we can go straight to the children’s assessment ward.

I should mention at this point that an important note on Sam’s emergency plan is cuddles. Yes, it’s true. When he’s having a seizure, giving him a cuddle not only provides him with comfort, we find it can sometimes help to take the edge off the seizure (what the NICU doctors would call containment) and it can also help you feel the seizure. You can feel its intensity and when it starts to slow down.

We often find that Samuel’s worst time is during the evening. Between 7pm and 9pm is what we call the ‘danger zone’ as this is when the level of Sam’s drugs in him has dropped and we are waiting for the evening dose to top him up. He is often extremely unsettled and more likely to have a seizure. BUT over the last few days (possibly the week) he’s said ‘up yours’ to the danger zone and slept through it!

He has been far more settled and we’ve had a lot more settled awake periods which is lovely. Although it is so nice to see him like this, we still have to take one day at a time because although he’s been so good like this recently, it doesn’t mean it will continue. So we enjoy every minute that he’s calm, settled and relaxed and make sure that we remember it as often you can forget what it is like when you hit a really rough patch.

Epilepsy, plus ARX seem to make up their own rules and just when you think ‘yeah, everything is going really, really well’ it pokes you in the eye!

Meet the gang

Samuel likes to hang out with some special friends at home.

Edgar and Max hang out with Sam in his nest downstairs. Edgar was given to him by his Auntie T and Max was given to Sam by Auntie C when he was in hospital having his gastrostomy to keep him company.

Grannie Bear was knitted for Sam by, well yes you’ve guessed it, his Grannie and she looked after him when he was in his cot in NICU. Grannie Bear stays up in his cot (also known as The Cottage) and looks after it for when he comes up at bedtime.

Sam and The Gang.The coolest gang around.

Sam with Edgar and Max

Sam with his boys: Edgar (the elephant) and Max (the dog)

Sam with Grannie Bear (in NICU)