Tuesday 11th October

Thought it was about time that I did another update. So many things have been happening recently so I'm not sure where to start!

William has recently had his referral done for Early Years Support which has meant lots more people getting involved. This has meant lots and lots of appointments and it's not unusual to have an appointment every day in a week. We now see a Physiotherapist, Occupational Therapist, Speech and Language Therapist and Visual Impairment Service and we are shortly to start seeing Portage. They're all really lovely people and offer us loads of invaluable advice but sometimes it can be a lot of information to take on board! William still has weekly respite in the home provided by a couple of lovely carers based at the hospital who come for an afternoon per week and an evening per month. When we need them we also have the consultant at the hospital, the community nurses, the health visitor, the GP, the dietician and we're soon to meet the symptom management true colours nurse so there's a lot going on! We're so blessed though that each and every person involved is absolutely lovely!

In general William's been doing really well recently. He had a few nights in hospital a couple of weeks ago when he picked up a virus and needed some help with his oxygen. Here's a little photo of him with his little teddies! Colds and viruses really knock him out for a good couple of weeks but he seems much better now. His fits have been manageable recently. He still has spasms several times a day which really upset him and he now wakes up every night with them. His other fits seem to come and go. He might have a bad few days with lots of little fits then they might stop again for a few weeks. I mentioned in my last post about a new type of fit he'd had and he has had a few more of these so I filmed one and showed it to his doctor at the hospital who confirmed it looked like a tonic clonic seizure. Last week he had his first proper serious tonic clonic but thankfully it only lasted about 2 mins so I didn't need to give him his midazolam. It was very scary though and we have to keep a close eye on him with these as if they last longer than ten minutes he will need treating. On a positive note he's not had his phenobarb dose increased still since June so that's good.

William spent his first couple of nights at the hospice last weekend. They called on Thursday to say there had been a cancellation so he went in on Friday afternoon till Sunday afternoon. We went to visit him on Saturday and found him laughing away with his carer so we felt reassured that he was ok. When we took him in on the Friday he seemed a bit under the weather, he'd been really sick as we left the house and had been having quite a lot of small fits which were making him go a bit blue. However the hospice is well prepared for children like William because that's what they do so they were fine with him! He gets his own carer while he's there and they keep lots of notes on how he's been. He was able to play with his feet in shaving foam, play in the sand and have lots of stories read. He really seemed to enjoy it. We missed him a lot but also really appreciated being able to switch off from the William routine! There's that saying, 'you don't know what you've got till it's gone', well being without William really made me realise how much a part of our life he is now, it didn't feel right walking the dogs without him. It made me realise how much we'll miss him when he's not here anymore except then he won't be down the road so we can't pop in so it makes me want to be more thankful for every moment we have! When William is unwell and his fits flare up you daren't really take your eyes off him for fear you might pop out the room and return to find him blue with a fit or choking on mucus so getting on with life is a bit tricky. We literally spend most of our lives with the worry at the back of our minds of what he's doing, is he having a fit, will it end soon, is he the right colour, is he going to be sick etc, so to not have to constantly be worrying about those things was a huge relief!

One of the other major things going on at the moment is discussion over our house and adapting it to be suitable for William as he grows more. He's already big for his age and as he doesn't support his weight at all he feels even heavier than he is. Our OT has advised that we need to start planning ahead and thinking what adaptations we will need. This will probably involve installing a through floor lift and a wet room for William, ensuring he has a bedroom big enough for his specialist bed, making sure we have easy access into the house for a wheelchair etc. After much discussion we don't feel our house is the best house in which to make these changes, we don't have a drive which would make it especially difficult if we ever got a wheelchair accessible car and and if we were able to go on and have other children we'd quickly run out of room and we don't want to have the adaptations carried out twice if we don't have to because its not an easy process. We have therefore discussed with the OT about moving house and have started getting valuations on our house and looking round a couple of others. We need to sell our house for as much as possible to buy a house with as much room as possible and potentially have money left to extend if needed. It's a really tough decision because we love our house and have only been here a short time and our families have helped us renovate it all but we need to do what's best for William (and our backs!). We had a very disappointing valuation yesterday but had another one today which was much more in line with our expectations. We obviously have very specific requirements but also want to stay near where we are now so we can easily walk to town as getting William in and out the car is not the easiest. Anyway we'd appreciate lots of prayer about this because we don't know what to do, what to potentially buy etc.

I think that's all for now. I said I'd write about the book I was reading but don't have time now. But to summarise I finished it and it was very sad and I cried a lot and became totally terrified about what we were still to face but have now put it out my mind and given the book to Nana G to read!

P.S. William now has 6 lovely (if not very gappy) teeth! Unfortunately one of these is chipped - we're pretty sure as a result of hitting it with another tooth during a fit so he often makes his tongue and gum bleed during a fit but it doesn't seem to bother him any more. We're waiting for a referral to the specialist dentist at the hospital.

P.P.S. William has recorded some special videos for you all and one for his nana and grandpa as they are away....