So we have a few things that we need to do before the end of the year:
New special bed
We have finally been approved for Samuel to get a new special bed. It will be able to go up and down and tilt at both ends and will be perfect for Samuel. His new big boy bed will be standard single bed size.
We have had confirmation that Samuel will get a Statement (special educational needs) which is no surprise at all! Fortunately it has been recommended that Samuel attend the same school that we want him to go to – it is the only school in the area that can cater for Samuel’s medical needs as well as development needs and it is just a wonderful school. We now have to wait for the school to confirm that they have a place for Samuel and when he can start. When he starts I will sit in on his sessions while the school get to know Samuel and his seizure protocol. The school has a number of nurses on site and the lead nurse knows Samuel’s doctor very well and is in fact studying for a Masters in epilepsy! Once everyone has got to know Samuel, I will next tackle the issue of whether Samuel can go on the school transport – although I will need reassurance that the escorts on the minibus are adequately experienced and equipped for the 25 minute journey to and from school. I’m a bit nervous about that. In fact I am really quite nervous about it all really!
We are waiting for a start date for work to begin on Samuel’s new bedroom and wetroom. It will make life much easier and more comfortable for both Samuel, us and his carers – especially as we look to have overnight care support. The wetroom will have a shower and Samuel will sit in a shower chair which we can just put him in and wheel him into the shower. It will be much easier than lifting him into his bath chair in the bath as we currently do.
We have decided on a ‘twinkle twinkle’ theme for Samuel’s new bedroom.
Samuel’s birthday party
Samuel turns 3 in November. 3. There was a time that we honestly never thought we’d get this far and to be honest, sometimes we still feel like we want to pinch ourselves. We want to arrange a proper party for him this year and invite his pals and those that love him.
Wheelchair accessible vehicle
When Samuel turns 3 we will be eligible to get a wheelchair accessible vehicle. Samuel will be able to sit in his special buggy and be wheeled into the vehicle and strapped in. We wont have to lift him in and out into his car sit or take out & put together his (heavy) buggy. We have ordered a VW Caddy Maxi Life. And we’ve chosen blue, if you are curious.
Nursery for baby Buddy
When Samuel moves into his new bedroom, we will need to sort out the room he leaves and transform it into a nice nursery for his little brother. Our theme will be Noah’s Ark/jungle animals.
Care plan for Samuel for when baby Buddy arrives
We need to start thinking about care provision for Samuel for when the baby arrives. We currently have two professional care providers – one being Julia’s House. Plus are are lucky to have the very wonderful Auntie Carol and my very good friend Leela who will be coming on board and be trained to be a Samuel carer and official cuddle provider! The tricky part will be the ‘the baby’s on his way!’ time when we have to call people in at short notice. I think I’m more anxious about this than the actual giving birth part!
So the last few months of 2013 will certainly be interesting and busy!