We thought it would be good to write a little about what we would put any money raised towards. There are currently two main pieces of kit we are considering.
The first is a specialist double buggy (as we are expecting our second child any day now). William is too big and too floppy to use a standard high street buggy of any kind. We've had a good look around and considered many options but there isn't anything suitable on the high street. We then found a buggy called the Activate tandem which is the only thing like it available in this country. It is a double inline buggy with a specialist fully supportive seat at the front for a child like William and a 'normal' seat at the back for another child (http://www.activateforkids.co.uk/tandem.htm).
We had a trial with the buggy a couple of months back and really liked it (despite it being bus like in proportions). However because it's a specialist piece of kit it comes with a hefty price tag of £3500 (including all extra bits we need). We have applied to a charity for funding and are currently waiting for a response but even if we are successful in securing funding we will still be required to self fund 20% of the cost. We are therefore unsure at the moment whether we will proceed with this depending on several factors.
One of the factors affecting whether we will proceed with the buggy is that it has become apparent that there is another piece of kit we need more. At home William has a specialist chair by JCM called a Triton.
Here you can see William in his chair. It offers a lot of postural support and is a great chair but we have two main problems with it. Here you can see William with his head flopped forward. He doesn't usually sit this badly but on certain days it is a big problem and we are left with no option than to take him out the chair. We are currently starting to look at some other head support options and will be starting with a trial of a neck support called the Hensinger. If that doesn't work we may need to revisit the possibility of getting an i2i head support but these are expensive and complex pieces of kit. Any additional head support items needed will be funded through our OT.
The second problem we have with the chair is regarding William's breathing. In the last few months we've noticed more and more that William can struggle with his breathing when sitting up, especially when he sleeps sitting up. A few months back we had an appointment with the respiratory paediatric specialist at our local hospital who advised that as William's difficulties are for relatively short times during the day (as he is usually fine when asleep at night in bed) and given that he has many other problems there was no need to take further action at this time. What it seems is happening is that William has an obstructive apnea occasionally when he sleeps sitting up, probably caused by a floppy airway due to his low tone.
We would really like an alternative chair for William on days where he is having more difficulties with his breathing or when is head control is poorer. At the moment the only other alternative is putting him on the floor, which he does like but which isn't great when he's stuck there all day.
There is quite a big market for specialist chairs for people like William which are more like living room arm chairs. They offer a more comfortable relaxed type of seating while still offering good postural support. If we had a chair like this we could recline it more to help William on his more difficult days. A greater recline would help him with his breathing and reduce the need for him to support his head.
We currently have a short list of five chairs that we are looking into and possibly going to trial. If you are interested they are the Kirton Duo Mini, Leckey Comfee, JCM Jupiter, Symmetrikit chair and P-Pod beanbag seat. Each offer different advantages and disadvantages so we will need to trial them to see which works best for William.
At this stage we do not know if we will need to pay for this new chair ourselves. As we already have a home chair which has been funded through the OT we are not guaranteed funding for this one. The chairs vary wildly in cost with the most expensive coming in at £3500. The P-Pod is the cheapest chair by far coming in at around £500. However this is probably going to be the worst option posturally and therefore not necessarily the best option. Deciding which will be best will depend on what suits William, what fits in our living room and what we can realistically afford if we don't get it funded.
We plan to put any money Michelle raises towards one of these two pieces of equipment. In the case that the chair is funded through the OT and we don't get the buggy (because we are turned down for funding) then we will have a think what would be the next thing William needs. Rest assured there are always pricey pieces of kit that we will need to pay for just around the corner. As we begin to think about moving William from his specialist buggy to a wheelchair we may decide to purchase our own specialist buggy as an alternative to the wheelchair as they are generally better on rough terrain.
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