Where did February go? Blink and you missed it! In part I think it went so fast for us as we were so busy with lots going on that it doesn’t feel like we stop, much the same as most of you reading this I’m sure. I always feel an element of guilt writing these posts, you all have stuff that keeps you awake at night and in that respect we’re no different, please stop me or stop reading if I sound like I’m moaning.
Like any other parents we seem to always be tired, is that a parent thing or a Toby thing? Never quite sure but I know Toby’s condition exacerbates situations. A few weeks ago Dravet Syndrome UK, the charity that supports families dealing with Toby’s condition, asked us to trial and test a new seizure monitor for them which we happily agreed to. It’s gone well, it’s a piece of kit that detects movement in bed that is easy to set up and use. The trick is configuring it so that it sounds at the right time, not sensitive enough and it might not alarm when he has a seizure, too sensitive and we’re rushing into his room at 4am because he’s had a wriggle in bed. Trying to get back to sleep when your body is coursing with adrenaline is pretty tough and no matter how hard we try not to get too wound up by alarms and noises in the night we know just how bad it can be so we always spring into action without thinking.
I thought the monitor was good, certainly better than another model we tried so, thanks to your generosity in supporting Toby’s Trust we purchased one to give us an extra level of comfort that we can monitor Toby in bed at night. It’s certainly not perfect at detecting seizures but it’s better than only having the sound and video monitor.
We had a three night trip over to Helen House which was good, it was nice to get a break but Toby’s getting more and more aware and whilst he loves playing with all the toys he knows he’s not at home and we’re not always around, he looked really relieved to be home. Guilt!
Whilst we were away we managed a night away at Eynsham Hall, a beautiful old stately home that’s now a hotel and conference centre. The hotel has chosen Helen & Douglas House as their nominated charity and offer all parents of children staying there a free night’s stay which is pretty amazing. The room was excellent and beautifully decorated and the restaurant is something to behold, well worth a night there if you’re heading that way.
Must be feeling a bit better
While we were away we had the desire to do more, more than collapsing in front of the TV, eating, drinking or just sleeping which must be a good sign that the respite we’re getting is helping. Not only did we spend some time having a walk about around Oxford and exploring some Roman ruins we had the energy to tidy the garage when we got home. I know this sounds like a mundane task, and it is but there was a real need behind it.
The amount of ‘stuff’ we need for Toby on a daily basis seems to be increasing weekly, we have supplies of feed, bottles, tubes, drugs, syringes not to mention all the physical equipment. Staying on top of it is a proper job so having everything organised so we know what to order and when is really important.
We’re continuing to get the respite care for ten hours a week which is great and really helping us to work, relax and even get out. For the first time on the last day of the month we left Toby at home all day with his new carer and nurse while we went out, it was great to be together and do something different. It was sad to get home and find that Toby had had a seizure just before we got back but his ‘ladies’ coped well and it’s the reality of life with Toby.
We do feel very lucky that we’ve got a great ‘team’ around us, from the respite agency Amegreen through to Toby’s Physio, Occupational Therapists, Portage, Speech & Language and Complex Needs team, and most importantly our family who do so much for us. Everyone helps us to get through each day and be able to have a smile on our faces (most of the time), but we often miss our quiet lives.
Last week we had nine people in the house one day, twelve the next, so many that we have to split up and have ‘appointments’ separately in the house with different people just to fit it all into the week. It’s quite overwhelming.
Over the last month there have been a few bits of really good news, firstly Toby’s Education and Health Care Plan is progressing and one administrative hurdle is being bypassed and he’s going to get an ‘assessment’ place at the Redway Special Needs School in Milton Keynes. We’re very grateful for this but have mixed feelings, Toby going to school in the first place feels like a massive step, the travel time will take it out of him but on the flip side it’s a great school with medical teams on site who are very used to dealing with seizures.
The council have also agreed that we qualify for adaptations to the house for disabled living. Again this is fantastic and we’re really grateful but it opens up a whole set of questions like how disabled will Toby be? When? What will he need? Can we fit it in our house?
A great example is the bath, we’re really struggling to lift Toby in and out as he doesn’t assist at all, this is only getting harder as he gets bigger and we’re both feeling it in our backs. Our Occupational Therapist has been amazing and found a bath that lifts up and down and has a platform in it so we can lift Toby out of the water, it’s fab. It also doesn’t fit in our bathroom.
We’re now talking to the council and architects about possible adaptations to the house to accommodate all this equipment.
A couple of friends suggested we watch DIY SOS from a couple weeks ago which we did. Not something we can usually face watching as it’s a little too close to home but I did watch it, pausing lots to wipe away the tears, and was blown away with what they achieved.
That same morning I tweeted Gabriella the designer on the show who has been lovely and offered to get contacts for the equipment used and to look over any designs for the house we come up with. Sometimes it really is worth reaching out for some help.
Toby’s seizures seem to be fairly constant at the moment, some days he has dozens of twitches and jerks, others it’s a lot, lot more which as you know keep us on edge and terrify us.
He’s have fully convulsive seizures every week, each time out of the blue without warning. I was bathing him one morning which is always a risky business, he was laughing and loving being in the water as he does when all of sudden he’s face down and convulsing.
It never gets easier to watch, deal with or recover from. I don’t think it ever will.
It’s an odd thing to say but our situation has given us a fresh, positive approach to life. Yes we live day to day because of Toby’s condition but it’s the people around us that continue to amaze and inspire us.
If Toby had been ‘normal’ (with us as parents he would never be normal really!) Kim would probably be at work full time, Toby would be in nursery or at grandparents houses and we’d continue to live in our lovely little town, oblivious to most of the people around us.
Instead, Toby gets to spend lots of time with lots of different people and we have met, and are known to a huge amount of people in town who have been physically, financially and emotionally supportive to us.
Kim and I get more opportunities to do things, we have breakfast and lunch together a few times a week, doesn’t sound a lot but we make the most of everything.
We also feel how far Toby’s reach is. Last week we received a cheque for Toby’s Trust from a company we’ve never heard of, turns out an old colleague, Yvonne, works there and had asked for the ‘coffee kitty’ to go to Toby. I haven’t seen Yvonne in years so it was a lovely surprise.
It’s not the value written on the cheque or on a deposit into the bank account that gets us, it’s the thought that’s behind it and someone doing something for our little boy that brings tears to our eyes.
And speaking of thoughts and actions…..for all those in Olney and surrounds, Friday the 1st April, Hazel, one of our lovely neighbours has arranged a quiz night to support Toby’s Trust, click the poster image to blow it up and get full details. It’ll be a great night. Thanks Hazel.