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!
