22nd September 2014

There's been a lot going on in William's world recently so I thought I'd do a little blog update for all of William's loyal fans!

The past few months have been difficult ones for William. Something is bothering him but we're not sure what. He had a cold about three months ago and hasn't been himself since. He wants to sleep a lot and when he's not sleeping he's often whinging because he wants to be asleep. We've also noticed that he's getting recurrent mouth ulcers at the back of his mouth which might be causing or contributing to the unhappiness. It's been difficult to see him so unsettled and I'm now thinking we need to take more action to see what might be causing it.

William is now attending school four full days a week. Reports from school have been mostly positive so far this term and William seems to be enjoying himself. The staff are brilliant with him and very in tune to his needs. He has a lovely new teacher this year who we really like. The extra days at school seem to be making him extra tired and he often comes home very tired. We had wondered whether this increase in school time was contributing to his unhappiness but it lasted over the summer holidays so that doesn't really add up.

We recently met with William's orthopaedic surgeon following William's latest hip x-ray. Children like William are at high risk of hip dislocation because they don't weight bare so he has had his hips x-rayed regularly from an early age. His hips have suddenly moved quite a lot between his last two x-rays, one is about 50% out of socket and the other is about 70% out of socket. The surgeon was lovely and explained that the sockets in his pelvis have formed well so she would only need to break his femurs to re-set them, rather than his femurs and pelvis. However, it's a major surgery to go through and she believes it takes a year to fully recover from it, so she will only operate with good reason. At the moment William is still tolerating standing well in his frame and isn't in any obvious hip related pain so for the time being she will monitor him and reassess the situation in 6 months. Of course we are concerned that his current bout of unhappiness may be hip related but we aren't seeing obvious patterns of discomfort linked with standing/being moved/being left in one position for a long period so we can't be sure.

We are still waiting the arrival of William's new wheelchair. We are hoping it will arrive sometime in October and we are very excited about it's arrival. Here's a couple of photos of William in it from his assessment.

We are also hoping to soon purchase the specialist buggy that our good friends raised £1700 for. We have applied for the additional funding from a local charity so are waiting to hear back from them before ordering. William is also waiting the arrival of a new headrest for his home chair. We've been having increasing problems with head supports as shown in the photo. We recently trialled a headrest called the Rollercoaster and William's OT has now ordered one for his home chair. If this works for him we may look at getting one for his school chair, wheelchair and standing frames. We are also hoping to get William a P-Pod style bean bag seat (http://www.specialisedorthoticservices.co.uk/product/p-pod/).

Rollercoaster headrest

Because William is so exhausted when he gets home from school he is unable to tolerate his therapy chair. Currently we lie him on a mat on the kitchen floor while we eat tea but we'd rather not put him on the floor while we are eating. The p-pod is a more relaxed informal seat which William can relax in after school. It's not particularly liked by his physios but we need to balance his postural needs with all his other needs. Tonight we had a call from William's OT to say she has located a p-pod in their stores so she is getting it delivered to us to try to see if it's the right size. We are really hoping it is so we don't have to purchase one ourselves.

The final major thing going on for William and us at the moment is we are have been considering putting William onto a blended diet. Currently we get a monthly delivery of nutritionally complete prescribed milk which we feed William through his feeding tube. A blended diet would mean eventually taking William off this feed and giving him pureed 'normal' food. This would be a fairly big undertaking (at least initially) and would involve buying a fancy very expensive blender so it's not a decision we want to rush into. The idea was put to us by William's consultant when we had a discussion regarding the risk of gut failure in someone like William. There are no proven benefits of a blended diet but the children I know on it thrive on it, and common sense tells you proper food is better for you than formula. In the first instance I would hope to be able to manage William's secretions better and to manage his constipation using more natural remedies rather than relying on medicine. I am due to meet with the dietician this week to discuss this further. She advised me today that we would need a multi disciplinary meeting with all professionals involved in William's care before I undertake the diet, which seems crazy given it was William's consultant's suggestion. I will see how the meeting goes this week but am hoping to start very soon giving him regular food. We would start very slowly to watch out for any intolerances and to see how well William tolerated it. I love the idea that I can feed my own child with food I have prepared and chosen for him. His feeding is so regimented, he gets the same thing at the same time at the same speed every day. I think this diet could bring us a bit of normality.

Check back soon for updates!

New Chair

I wrote a little while ago about the sponsored walk our friend Michelle is doing and what we were planning on putting the money towards.

We've had a bit of a change of plan so I thought I'd write to update.

William in his therapy chair

We were considering putting the money raised towards a specialist double buggy or a specialist relaxing chair for William. We have now decided against both of these, at least for the time being. We had a second trial with the double buggy and decided it was too big and heavy to use frequently. We therefore felt it was a waste of money buying it. We do still anticipate needing a more informal home chair for William at some point in the future but he has been tolerating his therapy chair well recently and we have been shown a few things we can adjust on it when he is struggling more with his breathing.

Here you can see how William keeps his head locked to the left.

Since I last wrote we have been to back to wheelchair clinic with William to begin assessing him for a wheelchair. He is currently using a specialist buggy called a Kimba Spring but is on the verge of outgrowing it. It is also no longer offering him the postural support her needs. His head is not well positioned and he keep his head locked to one side and he needs a better harness. We are awaiting a follow up appointment to try out some different chairs. Once we receive the wheelchair the Kimba Spring buggy will have to be returned to wheelchair services. Wheelchairs tend to offer more postural support options which is why we switching from a buggy to a wheelchair.

We have a three wheel off road base that we bought ourselves to go with the Kimba Spring seat. This also turns into a bike trailer allowing William to join us on bike rides. Once the Kimba Spring buggy is returned we won't be able to continue using the three wheel base and bike trailer as we won't have a seat unit. Therefore we have decided to put the money towards another Kimba buggy.

We will get the next size up which means it should last William several more years. The Kimba Spring is no longer in production so we think we will need to get a new model Kimba Neo unless we can source a Kimba Spring. Having had a brief look at prices, weighing up all the postural accessories William will need, we predict needing about £2500 for the buggy. We will put any money Michelle raises towards this and fund the rest either ourselves or through grants from other charities.

Thank you so much to Michelle for agreeing to walk so far for our little William! And a big thank you to everyone that's already sponsored her. We are incredibly humbled and grateful. If you would like to sponsor her and help encourage her on you can at http://www.gofundme.com/69jr58.

Kimba Neo buggy

William using the three wheel base set up as a bike trailer with his current Kimba Spring seat

Brixworth Country Park

So this weekend we decided we needed a nice quiet family day out as we've had lots of visitors over the last few weeks. We did some research into where might be nice to go and decided to just go for a walk around our local reservoir. While I was looking on the website I noticed a link to a country park on a different reservoir about an hour away from us.

This is how it was described on the website:

"Developed with Millennium Commission funding, the park is a national showpiece for accessible countryside – providing access for all irrespective of physical or mental ability and social or cultural background."

"Centred on a seven-mile surfaced track, suitable for cycles and pushchairs, are a number of well maintained access routes servicing our activity centres and attractions. Brixworth Country Park was designed specifically to meet the needs of visitors with disabilities."

I read up some more online and found the park had a sensory garden, footpaths suitable for wheelchairs and buggies, a playground with some accessible equipment and a changing places bathroom (this is a bathroom designed for someone like William equipped with hoisting and a full size changing bench).

We were very excited to discover somewhere that would be a good day out for all our family so headed off yesterday with great expectations. Unfortunately we were left very disappointed. I'd been all prepared to write a great review recommending it to all my other SN mum friends but  it soon became apparent I wouldn't be recommending it at all.

First of all the sensory garden:

Rusty musical chimes

Was this supposed to be a chess board?

Mostly dead looking plants

Water fountain wasn't working

We thought the sensory garden would be a lovely colourful garden which would have lots to see, hear and smell for William. Sadly it was dreary, neglected and dead looking. It probably didn't help that we went at the end of the winter but you could just tell it wasn't well maintained at all. The hospice where William goes has a lovely sensory garden with lots of different smelling and colourful plants. There are also some lovely colourful outdoor musical instruments in the playground which would have made a great addition to this garden. 

Secondly we were attracted by the promise of wheelchair friendly paths. While there weren't steps etc the paths were actually quite bumpy which meant William's head was bobbing around as he has no head control and half way round our little walk he was sick because he had been jolted so much in the buggy.

Thirdly, while we know better than to expect any playground to be fully accessible, we were encouraged by the promise of some accessible equipment. The playground was brilliant for mobile children but there was only one swing William could have used. This would have involved us lifting him out of his buggy though so would not be suitable for bigger non mobile children. It looked like they'd given it some thought, for example there was a roundabout with more full supportive seats. However they'd completely bypassed the point that some children cannot get out of their wheelchairs or support themselves in any way. Again, the hospice where William goes has a fabulous playground. It is really accessible to someone like William (it has a wheelchair swing and a level access roundabout for pushing wheelchairs on to) but is also completely usable by mobile children. The playground was heaving and there was no way we could have put William on the swing without another child just climbing on aswell. 

Finally, we had seen there was a changing places bathroom accessed via a Radar key. While the bathroom was as promised the equipment was well overdue a service (as identified by the service label on the change bench) and there were so many spiders on the ceiling that I couldn't stay in there. Would it really be such an effort for someone to give it a sweep out once a week? 

We had been so excited that someone had given some thought into the design of this country park, but as is usually the case we found it was poorly maintained and poorly executed. How was this a park "providing access for all irrespective of physical or mental ability"? It wasn't "accessible" to William at all. It has become apparent that we as a nation we are terrible at understanding what the term 'disability' can include. At a local shopping centre to us they have around 10 disabled toilets, if not more. Not one of those toilets had a change bench for someone like William meaning he would have to be changed on the toilet floor. We seem to think all disabled people are capable of sitting on a toilet and of getting onto that toilet with just the help of a handrail. 

It makes me so sad that on Children in need night the country is so compassionate towards children like William, giving generously to support charities such as the hospice which supports our family, and yet the rest of the time we don't give a second thought to meeting the needs of people like William. We spend so much time trying to think of fun places to take William to and always come up with a blank. It would be too dangerous to take him to a soft play centre, local swimming pools are too cold with poor change facilities, he can't sit on any rides at the theme park, he can't go on any of the equipment at the local park, he can't see any of the animals at the zoo, it's near impossible to push his buggy on the beach etc etc etc. 

It's just so frustrating.

Equipment

You might have seen on facebook that one of our good friends, Michelle, is planning on doing a sponsored walk in order to raise money for some equipment for William. She will walk from her home near Kettering to ours near Huntingdon, a distance of around 35 miles.

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.