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!

Respite to the rescue (part 2)

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

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

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

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

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

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

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

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

I just can’t wait.

Auntie C

I really should tell you about our guardian angel. Seriously, I believe that we have a guardian angel, but she doesn’t have wings (well, none that I’ve seen), instead she wears a nurses uniform and looks after hedgehogs.

Let me explain.

Auntie C lives two houses up from us and we did know her before we had Samuel but only really just to say hello to. We got to know her husband much better as we were trying to sort out some problems we were having with the neighbour inbetween us.

But then Samuel was born and the day after he came into our lives, he was admitted to the Neonatal Intensive Care Unit where Auntie C just so happens to work. A few days into our stay (I’d not seen her working there at this point) we came into the unit, went over to Sam’s incubator and there waiting for us was an absolutely beautiful photo of Sam, his ink footprint and a gift bag full of baby goodies. That was the first of a thousand wonderful things Auntie C has done for us.

She has become so involved in our lives, such an integral part of our family that we asked her to become one of Samuel’s Godmothers when we had him Christened shortly after we came home from hospital.

Auntie C has been a nurse for over 25 years and in that time she has seen so much, seen just how damn cruel nature can be, so when I tell her the worst, the hard details of what the docs have said she doesn’t flinch. But I can see it in her eyes, the saddness, not just for Samuel or us, but for her as she absolutely adores him.

Until we start having respite with our local hospice, Auntie C is our only babysitter. Although our families continue to be supportive to us, emotionally (particularly my mother who has been terrific) and financially, they don’t feel confident in looking after Sam on their own and neither do any of our friends. So it is Auntie C who comes to the rescue!

But Auntie C’s wonderfulness doesn’t just stop there. When the premature babies in the unit reach 100 days, Auntie C (out of her own money & in her own time) bakes the parents a yummy cake to celebrate. When the premmies reach 1 kilo she bakes the parents a cake. When the babies have their first bath in the unit she gives the parents a tiny rubber duck for their memory box. When it’s Christmas, Easter, Mothers Day or Fathers Day she takes a photo of the baby and puts it in a card for the parents.

And there is more. She also takes in baby hedgehogs, injured birds, squirrels, ducks (yes ducks) and nurses them back to health before releasing them.

She is always on hand whenever we need some advice. Or just some moral support. When Sam’s Dad and I recently caught a bad tummy bug from when Sam was in hospital, she went to the chemist for us and brought round a gallon of lucazode while we were laid low.

She always buys Samuel lovely presents (and us!) and fancy dress costumes – his first Christmas while in NICU she dressed him as Christmas pudding, a bunny (with carrot) at Easter, a pumpkin for Halloween and this Christmas, well, he was a snowman.

No present, no card,  no words can tell her what she means to us. We could never in a million years repay her. But I know she loves her cuddles with Samuel and has spent many hours here on our sofa giving him a good squeeze.

To us she is our guardian angel and we will treasure her forever. x

Happy New Year

Samuel’s first Christmas at home was really lovely. To be able to wake up on Christmas morning and see him there snoozing in his cot was just fantastic.

Christmas 2010 was spent huddled next to his cot in Neonatal watching the nurses doing things for him, but this Christmas he was all ours.

We don’t know what 2012 will bring, but I pray with everything in my heart that Sam will have a comfortable and healthy year full of love and cuddles. And importantly next year I will be here again posting photos of his second Christmas snuggled up at home.

I hope 2012 will be a happy and healthy year for you all, especially my good friends on twitter who are amazing characters. Don’t worry about the small things this year, don’t let petty things get in the way of appreciating the important stuff.

Enjoy all the cuddles you have with your little people.

Happy New Year my friends, have a good one. x


The first post

I am mum to the most special and beautiful boy in the world, Samuel Luke, who was born on 10 Nov 2010. He is the most beautiful baby I’ve seen in my whole life. He has the most amazing blue eyes and the most riduclously long eyelashes any woman would be proud of. My son has an extremely rare genetic disorder called ARX which causes severe epilepsy. Sam spent the first two months of his life in Neonatal Intensive Care, cared for by the amazing doctors and nurses who we owe so much to. He continues to have seizures every day but they are much better than what they were. He is still very much a baby baby, but boy, he does love his cuddles. That’s when you know he is happy when he is having a good long cuddle.Because of his condition, we know that we may not have him for anywhere near as long as we should, that is why we celebrate every day with him. Every day is a beautiful miracle.But if you held him, he may not look at you, but you would feel how much he likes to be cuddled and you would come away realising how much you enjoy cuddles too and perhaps even how much you needed that warmth at that moment.He is our boy Sam. xx