Big news in our house – at school on a Thursday, they class now have spelling tests – the children have a week to learn the list and every Thursday they have a test. Albeit a very relaxed test, it is an indicator for us how little man is keeping up with the curriculum and how he is coming along. First week - 9/10, second week top marks!!! What a complete little star – it is a great relief for me as although I knew he was a clever little sausage, he has missed so much school, he cannot write (due to spasticity in his hands) he cannot read (due to visual issues) – I am floored that he has managed to overcome all of these issues, accept the same spelling tests that the rest of the class have been given and still do amazingly well – well done Toby.
Toby can now jump and clear the floor – what an achievement! He still has to hang on to something to do this, but the dynamics involved in jumping when broken down are very complex, and for his brain to sort out the signals and his muscles to interpret these messages enabling him to jump is fabulous!!!
We continue with physio, two new additions to our regime are
A cat lit tray filled with Moon Sand, this is great for when he is sat on his therapy bench and making foot shapes and building sandcastles with his feet. For other mums who are reading this for ideas to use for their children I will go into more detail. Toby has a Jenx Hydraulic adjustable therapy bench, this is height adjustable and padded (available from Jenx £381!!!)
An ordinary cat lit tray, and the newly discovered Moon Sand – you will need quite a bit of this sand, I have discovered it on Amazon for £17.99 a bag and you will need a couple.
Depending on the muscles targeted, the bench set at a low height and with Toby sat symmetrically, allows him to dig in with his heels, strengthening calf muscles.
With the therapy bench set higher, it allows him to tickle the sand with his toes, thus developing the tiny muscles that go along the top of your foot.
Moon Sand is great find for us - it is a cross between play dough and sand, it is quite malleable, and never dries out. Vacuums’ up and does not stain – result!!!
Our other new addition to physio is head torches!!!! You will need two head torches, the type that are small little wee ones, with elastic straps to fit around your head, except we use them around our ankles!
I will explain – it is a “later in the evening activity”, and one when we can pull the blackout blinds in his room. Toby and myself go up to his bedroom, we affix the headlights to our ankles or feet, and lie down on his bed, then with feet up in the air we flash the lights on the ceiling, play catch with the lights, light up dark corners, toys and all the while we are exercising the whole of his leg, hips and feet, we are also working against gravity, so an added bonus there. To increase resistance, you can also add ankle weights – Toby can only do this for a short time, and so can I!!!! it is really hard work – but it is great exercise and as it is lying down, Toby seems to think it is a relaxing exercise!!!
It is becoming a real struggle trying to cope with school work and physio, whilst still fitting in dinnertime and much needed cuddles for me!!! Thankfully since the spasticity has gone, Toby is not as tired as he used to be and is able to push bedtime to nearly seven o clock, but fitting in everything is a real time management challenge!
I have also been sent a couple of mails from other parents asking about the alarm that Toby uses for his epilepsy. In fact whilst in Toby’s neurological appointment last week, the Consultant asked me if I could also provide him with details of our alarm as he wants to use it to inform other parents who might be in the same position as us - I really hope to goodness that not many other parents are in our position with regards to epilepsy – it is the most frightening and never ending nightmare that any parent can be in. There is no cure, there is no end, there is no closure.
Anyway, the people that we received our alarm from are Muir Maxwell -
http://www.muirmaxwelltrust.com/what-we-do/epilepsy_alarms
here is a brief description of what their alarms do,
“When you are looking after a child with severe epilepsy, every waking minute of every day and every night is consumed with the anticipation of a seizure. Sleep deprivation becomes the norm. Night-time seizures are dangerous and there is a risk of death (SUDEP).
It is not unusual for children to sleep with their parents. Many parents check on their children throughout the night and the loss of sleep and the stress for the whole family is immense.
But there is an answer. For those children who have continual movement
for seven seconds or more as a result of a seizure, MMT can provide an epilepsy alarm. The epilepsy alarm
provides peace of mind and allows many families to have a proper night’s sleep
for the first time in years.
How it works – the potential life saving wireless epilepsy alarm sits under the
mattress of the child’s bed and alerts the parent or carer to a seizure while
sleeping. The alarm makes a piercingly loud noise if a sensor detects violent
movement in bed, enabling parents to act quickly and put the epilepsy sufferer
in the recovery position and administer medication as necessary. The alarm must
be used in conjunction with your own monitoring. “
For us, in conjunction with other methods, it has allowed Toby to return to his bedroom. From our experience, and again a concern to other parents – ours has never false alarmed, which I understand is quite a problem with some other alarms on the market.
Initially, last year, our neurologist expressed concern that it would false alarm quite regularly and we would become complacent to the piercing sound and not act quickly – that is something that will never happen, once you have seen your little baby so near the edge, that vision never leaves you and you never become complacent.
I will not allow myself to ever be off duty. It is not because I do not trust anyone else, but at night, when he is most at risk, it is me that is needed to ensure everything is done correctly and should anything happen, I am fully alert and prepared to act – and should anything ever happen, it is totally my responsibility.
After Toby had his first seizure, I was assured it would never happen again, it was a one off and not to panic.
Shortly after, I was meant to be going away for the weekend with a friend, it had been booked for months, but something made me cancel it, we had the day away together, but I did not want to stay over in a hotel for that night.
And boy I am so glad that I made the decision, as it was that night that Toby had his second and most dangerous seizure. To that end, it is my instincts that I trust, and at the moment, my instincts are telling me that ‘time for me’ will come, but for the foreseeable future I have to put Toby’s safety first and foremost.
Others might see that as being a martyr, although I would sincerely hope no one reading this blog would think these thoughts (wouldn’t it be nice to be able to screen your readers and only enable nice people to read my blog! – if only!)
I have had another couple of emails asking for some help with fundraising and what have been our biggest earners, I will go into that in more detail on another post but for the record - our biggest earner was Ian, Andy and Lenny’s bike ride to Blackpool– this brought in a whopping total of £6,500.00!!!!!!!!!!.
It helped to draw this amount, as obviously Ian is Toby’s dad and it was so personal and made people dig very deep, Andy is the local vicar, and so he had his full congregation behind him, and Lenny – well - he just has loads of mates!!!
Having said that – for us, it was not the amount earned, although that obviously helps you reach the target sooner and eases the stress, but more importantly it is everyone taking part and helping. No matter how small the donation – it all mattered.
So important to me was the genuine niceness that people showed, people that I had never spoken to would come and chat and show genuine interest and ask what they could do to raise some money.
This warmness continues now, especially in the playground, and there are some wonderful mums in Toby’s class, who have really helped keep me buoyant these past few months.
It is easy to look at your own problems and been consumed into the bleakness of it all, but people have realised that here is a little boy who represents hope and even though he has been dealt a bloody bad hand, can still come out of school with the biggest smile on his face – and be met by a mum who is the proudest mummy in the whole wide world!
(BTW _ thanks to the mums from SKITUK for their help and support through the forum – answering my questions and of course I will help the ladies who have recently contacted me – I will be in touch soon)
Stats update – from the beginning of October to the 10th – 1205 readers!!!! Pretty impressive!
