I realised today that I’ve been terribly slack with my blog posts lately. I use to be quite prolific but I’ve just been so focused on other things that I’ve neglected the blog. And you. So I’m sorry Mr Blog and our lovely readers and Sam fans.
So, what have we been up to?
Well Samuel got a new buggy a couple of months ago. I had been keen to get a new set of wheels for ages as he’d really grown out of his old one and we felt like we were having to cram him into it every time we took him out. Samuel’s new buggy is called Stingray and is made by R82 and is two-way facing, so while he’s still in the chair we can swish him around to either make him front facing or mum and dad facing. An added bonus of having this type of buggy and being able to make it front facing means he can go into wheelchair accessible vehicles while sitting in it. We are really pleased with it and he looks so comfy in it!
Samuel went to his first every ice skating party recently. It was his special friend George’s birthday party and all the children sat in their chairs and were whizzed around the ice rink. It was really good fun!
We also looked around a school recently. Now there was a time that we never mentioned the S word. Ever. Samuel wasn’t really expected to still be here for us to be considering schools, so the fact that we are discussing when he might start is an exciting feeling. We are totally in love with the school we looked around. It will be wonderful for Samuel. Perfect in fact. It currently has 24 children and has a real village school atmosphere. He will have physio there regularly and hydrotherapy once a week (their hydro pool looked amazing). Samuel would start off by going in for the mornings initially and I can sit in for as long as I feel necessary. We aren’t entirely sure when he will start, it will depend on the paperwork side of things – it might be a bit ambitious for him to be able to start in September, but hopefully we can start going by the October half-term.
We held our first fundraising event last month for Samuel and it was really successful. We were really touched by how many people came along to support us and Samuel.
Samuel finally met a very special friend for the first time last month. Ethan is a lovely little boy who also has ARX, the same condition as Samuel. It was wonderful to meet Ethan and his mum Naomi. We got the chance to have a good chat and I like to think we have become good friends.
As far as the diet goes, we are now looking at putting a plan together to wean Samuel off the Ketogenic diet. I’ve been the one delaying coming off the diet for quite a while now, but we gave it one last shot and I’ve finally acknowledged that it isn’t making much of a difference (if at all). Samuel started the diet a year ago and although we thought it all started extremely well and I was talking about diet dreams coming true, it didn’t last very long and has been a headache ever since. While I would make up the most complicated, time confusing feeds for Samuel if it helped him, since moving on to the MCT version of the diet, feeds are quite complicated to make up and is frustrating when you put all the time and effort in but not making any difference for him. Not sure when we will start the wean off, I will need to give Samuel’s doctor a nudge to coordinate with the dietician, but we will wean him off and move on to a different feed. We may also look at introducing another drug, possibly Topiramate (he has been on it before). Samuel needs something that has more of a consistent effect to help him. Coming off the diet will also mean we can resume sensory tasters which I must admit I’m really looking forward to. I’m keen now to move forward and put the diet behind us. A new chapter awaits.
Seizure wise, Samuel has been OK. Of course still having seizures everyday, but they have been managable and only occassionally needed a dose of Midazolam. This might also be because we’ve been using Chloral Hydrate (which is Samuel’s sleepy drug at bedtime) now and again during the day when he is very unsettled and twitchy, but not necessarily fitting into the protocol for Midazolam, his emergency medicine. One of Samuel’s medicines is Clobazam which is part of the same family as Midazolam. When we are having bad patches and using Midazolam frequently, it could be effecting the same receptors in the brain that Clobazam uses which means Clobazam might not be as effective as it should be. So the idea is that if we nip things in the bud early with a 3ml dose of Chloral (there is also thought that it contains anti-epileptic properties which is an added bonus), it may stop the need to give Midazolam later.
Looking ahead we also have a few things to look forward to towards the end of the year.
We are still hoping to have the garage converted into a bedroom and wetroom for Samuel. We are being given a grant from the council who will be overseeing all the work for us. Unfortunately this project has been very slow at getting off the ground, but the technical officer is coming out this week and I’m hoping we will get a better idea of when work will start – but it will probably be around 6 months before anything starts! I must admit that I am finding it increasingly difficult to carry Samuel around the house. I can still manage at the moment, but as he is getting bigger it will become very difficult before too long!
We are also hoping to be able to get a grant to make some changes to the back of the house to make it easier to take Samuel into the garden and for access to go in and out of the house with him.
Another big thing which will dramatically improve things for us is getting a wheelchair accessible vehicle. We have to wait until Samuel is 3 (which isn’t until November) and then we will qualify for the mobility part of his Disability Living Allowance (for those not in the know, the mobility DLA payments will go towards paying for the car). Being able to just wheel Samuel in and out of the car rather than having to lift out the very heavy buggy and a heavy Samuel will make such a difference! But we have to wait until his birthday, so need to be patient!
Life feels good at the moment.